This is part of an ongoing series that gives Bronx writers a chance to share their personal stories on the state of healthcare in America.
by Judith Lieben
September 9, 2018
Michael’s Nightmares and Insurance Hassles
My husband died after a lingering illness and he regularly had nightmares that his medical care would leave me bankrupt, without a house, food, or safety. These nightmares were so life-like that he would lie awake with his heart racing and sweating, causing medical people to come running (because of the monitors) and I was the only one who could bring him back to waking reality: “Are you sure all this is covered? Have you talked with the insurer? Are you sure? I want you safe. I can’t have all this treatment if you won’t be safe.”
When fully awake, Michael knew he was lucky. His job brought him “Cadillac insurance.” Almost everything was covered — although not for “free.” Regularly over the course of about 5 years, we would get billed for thousands of dollars. I’d pick up the phone, because he was often too sick to deal with details like this — sick people shouldn’t have to argue to get the benefits they’ve paid for.
Sometimes I heard that a “prior authorization” was required and hadn’t been received. Sometimes I heard that his card number had been rejected. Sometimes I heard that the insurance had paid X dollars and that he still owed 3X dollars. Then I called our “benefits” people and was put on hold, listening to music, being transferred around to different people, repeating the same numbers and dates. Michael would sit near me or lie on the bed we’d put downstairs for when he was too weak to make it up the stairs to our bedroom; he’d make a suggestion or ask a worried question. I kept a notebook of every number I called, every person I talked to, everything they’d said.
At his job, the HR person would tell me that bill was fully covered and she’d look into it. When I’d finally get through to an insurance benefits person who could handle his policy, I’d usually be told it was covered and the doctor, the hospital, the lab, the treatment place had filed the wrong paperwork.
Too many times to count, we received letters from collection agencies, demanding payment, threatening lawsuits, describing punitive finance charges, saying things that were scary to read. I always responded to these in writing: “The bill is in dispute. Return it to the provider immediately. Cease and desist doing anything that might damage my credit. If you have reported this disputed bill to any credit agency, immediately write them that they should delete your prior communication since the bill is in dispute.” My husband would dictate and sign these letters, so he always knew how many debts were in play — and how serious the repercussions might be. Then I would get on the phone to whoever had sent the bill to collection, and I was usually told it had been sent “in error.” My husband worried about me — as well as our credit, should it come to pass that we might need to borrow money should the bills get high enough, should it come to pass that he might die and leave me to deal with the growing number of open items all carefully annotated in my notebook.
When home, he was eligible for visiting nurses and home healthcare aides. That caused additional stress as each new person was required to do an “intake form,” sometimes lasting 2 hours or more — and some of them, heartlessly, required my husband to answer every question, refusing to take answers from me because “he’s the patient, not you.” Never mind that he was drugged, exhausted, too sick to remember every medication he was taking or the name and phone number of every doctor who was caring for him. Worse, after every hospitalization, this intake form had to be done again — there was no way to carry any information over because “things have changed.” No they hadn’t. The major change was always the date.
Ultimately, Michael’s care was “free” — and we were so glad to get good care and to have it covered — but it was never without cost. The insurers — both the one that wrote the policy and all those they subcontracted to — required constant paperwork to ensure that he was “eligible” for the service, drug, treatment, lab that his doctors ordered. The insurers had no qualms about deciding his doctors’ diagnoses and prescriptions were inadequate, wrong, badly coded, or not covered. His doctors, his nurses, and particularly the hospital insurance administrators also all spent hours on the phone and computers trying to get approvals and permissions, checking billing codes and FDA sites, talking with bureaucrats — at my request and on their own It cost us hours and hours and hours in person and on the phone to ensure he got the care that had been ordered, It cost us notebook after notebook of careful documentation to ensure we could give full explanations so I could advocate in compelling ways.
The doctors were clear and usually decisive. I always felt terrible when doctors (and nurses) had to spend their precious patient time explaining their medical reasoning (or worse, on hold) when they needed (and wanted) to be spending their time with patients. The insurers and the paperwork made life almost as gruesome as his illness.
Michael and I were lucky that he got the care he did. But I know that he got his care despite for-profit insurance — NOT because of it. We often grieved for those with small children or other ailing relatives who wouldn’t have been able to spend hours on this. For people less comfortable engaging bureaucrats, keeping notes, writing letters, advocating for healthcare that keeps a loved one alive.
All of us need a simpler, more affordable, and less costly system. It’s why single-payer healthcare, like the NY Health Act, will make such a difference in our lives. Doctors will diagnose and prescribe according to evidence-based protocols that doctors have approved — and get paid, promptly. All the time I spent? No longer needed. And my darling husband — and your loved ones — won’t worry about bankrupting their families, or leaving them homeless because of unpaid medical bills.
Judith lost her husband after 580 days of hospitalization during his two years of treatment. In his honor, she advocates for NY Health — which will eliminate financial obstacles to healthcare for New Yorkers.
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