The following story is by James Bliwas from Ohio , a winner of the 2012 Costs of Care Essay Contest.
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.
Last Tweets
What a sad situation, and yet, as a health care provider for over 30 years, I can describe all sorts of scenarios where health care dollars are seemingly misspeant, or patients are forced to battle with their insurance companies to receive the services they desire and require, and think they have actually purchased. Whenever I am inside a skilled nursing facility, I can’t help but wonder how many families would choose to have their loved ones stay at home, if the care could be subsidized in some way, probably at a third of the price of inpatient care.
One of the dilemmas we will all face Americans are all required to purchase health insurance, is that it is a mind boggling experience, and one never really knows what they are paying for, no matter the monthly cost or high deductibles, until the claims begin to be be filed. To find out that your insurer will not cover a provider or treatment while in the midst of trying to make your way through a serious illness, merely compounds the horrible situation as painfully described above.
Thank you for sharing your sister’s ( and Steve’s and your) story. It is both poignant and infuriating. As will be the case for every other physician who reads this, I have my own litany of examples of sheer irrationality. One that pops to mind is a patient who was dying of a progressive neurodegenerative disease (postmortem the best diagnosis that could be made was a very atypical demyelinating condition, but antemortem we had no real idea what was going on, despite repeated diagnostic hospitalizations at two university hospitals). This patient’s insurance had no issue with repeated hospitalizations and numerous courses of plasmapheresis but absolutely refused to pay for two weeks of an empiric trial of voriconazole on the advice of ID. No persuasive rationale – they just wouldn’t.
Blessings Jordan:
So much sadness in what is supposed to be a healing art. My brother died in 2005 in my spare bedroom at our home in Raleigh. The process for approval was frustrating for Bruce (my bro) since his physician was forced to assign him to a ‘date of death’ occurring in less than six months. All sense of hope disappeared with this payer business rule so Bruce decided not to take the referral. Subsequently he was denied the cocktail that would have eased his path. Then…three weeks prior to death Bruce was willing accept his fate and he moved home with my wife and I. Once I had a language of understanding established with the hospice nurse and a CLEAR understanding of my brothers wishes we were left alone to manage him in in the comfort of his family. On August 2, 2005 he took his last breath in my arms. I fell on him, my father on me and we wept. An intimate experience I will never forget.
Having worked in Rehab Medicine and later in clinical informatics I have been amazed at the various commercial guidelines for sale to third party administrators, HMO’s and –on the public side; Medicaid and Medicare. This is frightening material when one considers the dynamic nature of best practices. For example: when I was a respiratory therapist (1970s-1980s) we would never consider the use of a beta blocking agent for heart failure. However, when further hemodynamic information became available through 2D echo and other methods, beta-blocking agents became a standard for constrictive cardiomyopathy. So we patients and our physicians are left to trust a system to remain up-to-date and if we disagree expend incredible energy fighting for human rights.
Since the creation of business rules and care management guidelines stressing ‘the least costly’ alternative of care I have fought for glucose monitoring supplies (1980); insulin pumps; (1984) and lately a continuous ambulatory glucose monitoring device. All of these have extended my life and increased my health-related quality of life. The continuous BG monitor also facilitates the safety of others on the road. All I can say is that the ACA legislation continues to leave reimbursement guidelines in the hands of ‘corporations’; who…since they are individuals all operate under the principles of free market- self-interest! Of course, it is easy to talk about Accountable Care Organizations but we all know how those will work without preordained operating rules for safe and effective care.
As stated by Joseph Opatz in 1980, the evaluation of cost-benefit and cost-effectiveness in healthcare must account for the cost of the treatment today and the temporal consideration of the cost of treating pathology that would gone undetected if the patient died.
Depressing to read for a diabetic at that time!
Stories like this are too common, and they’re all crazy-making. The rise of employer-based group insurance since WWII has unleashed an army of actuaries who are tasked with calculating the cost-benefit analysis of the nation’s healthcare, while simultaneously the pricing for that care is set by a star chamber – the RUC – behind closed doors.
This industry needs sunshine like a Vitamin D deficient toddler does. It’s up to those of us who want to put patients in charge of managing their own care to keep banging the “how much IS that?” drum, and demand that the healthcare system becomes more human and humane, to reflect the fact that they actually care for *people*, not just balance sheets.