Earlier this year, I wrote about how my mom’s death changed my perspective about end-of-life care. After watching her final days, I no longer felt so certain that society should pressure families to make quick decisions about withdrawing life-sustaining treatment. I wrote:
We knew her end-of-life wishes: She had told my dad that she didn't want to be artificially kept alive if she had no real chance of a meaningful recovery. But what was a real chance? What was a meaningful recovery? How did we know if the doctors and nurses were right? In all my reporting, I'd never realized how little the costs to the broader health-care system matter to the family of a patient. When that patient was my mother, what mattered was that we had to live with whatever decision we made. And we wouldn't get a chance to make it twice.
It was one of a number of experiences with the health-care system that shaped my thinking as a reporter. Every time I write a story, I try to think about it from the lens of patients who deal with the system each day. I try to explain it and demystify it for them, to the best of my ability.
Lately, I’ve been wondering about whether other journalists have been affected by their own brushes with the medical system. I asked four of them to weigh in — Peter Frost of the Chicago Tribune, Gary Schwitzer of HealthNewsReview.org, Lisa Chedekel of Connecticut Health Investigative Team and Katy Butler, author of the book “Knocking on Heaven’s Door.” Here’s what they told me:
My mom, Pam, was diagnosed with breast cancer in 1985, beginning a six-year battle with the disease that she eventually lost. She went through round after round of chemotherapy, radiation and other treatments, racking up medical bills that surely would have bankrupted my family if not for insurance, which we had through my father’s employer. Of course, the out-of-pocket expenses still ate into some of my father’s savings and investments, though not nearly to the extent they would have without coverage.
From that point forward, as I grew up, my father beat it into my head that I must always be covered, no matter the situation. He continued to cover me through college and until I got my first professional job. Among the first thing he asked me when I was offered the job: What kind of health insurance policy do they offer? To me, going without coverage for even a day was never worth the risk.
Thank goodness for that. While I was far too young to know exactly how much my mother’s bills affected our family finances, a very real lesson came when my wife and I started having children. Both of them (now 5 and 2.5 years old and healthy) spent time in the hospital before coming home to us. Our son spent a month in a neonatal intensive care unit in Virginia before arriving home. The hospital bill for him alone was north of $90,000. The vast majority of it was paid for by my insurance company, after a fair amount of bickering and wrangling. Our share was still more than $6,000.
That experience alone was enough for me to question how this vast, complicated system functions, and how people with far less financial and educational wherewithal navigate it. So when I started covering the subject for the Chicago Tribune, particularly the Affordable Care Act, I wanted to focus my energy on explaining to people how this law works, how to approach the decision to buy insurance, what kinds of things they need to think about before signing up for coverage, and beyond that how to actually use the system.
Every single encounter I’ve ever had with the health-care system shapes my perceptions about how “the system” works and how we should write about it. Here are a few stories:
- My own ACL injury from playing basketball. A top orthopedist did the standard physical exam (the Lachman test of instability in the knee) and said, “I can tell from this exam what’s wrong, but we have an MRI which will provide a very clear picture … and your insurance will cover it.” Like probably any consumer would, I agreed to the MRI. It merely confirmed what the physical exam had already established. Bottom line: over testing and overspending and waste. (And this anecdote is from 25 years ago! I can’t imagine how many times it’s repeated today.)
- My mother-in-law probably had grounds for a lawsuit for what was to kill her, but she wasn’t the litigious type. In her 80s, her doctor pushed her to have a colonoscopy. The prep used at that time has been linked to serious problems and is at the core of many lawsuits. Within weeks she changed dramatically, was diagnosed with severe kidney disease and ended her life in terrible illness with the ups and down of dialysis. Bottom line: Why the hell are we doing colonoscopies on someone in their 80s?
- What we’re going through now with “assisted living” for my 93-year-old Dad. The Frontline/ProPublica project addressed many of the themes that we’ve seen - fortunately none as tragic as those reported. But the “it’s really just expensive real estate” theme is something families just don’t realize until they get into this. Even my Dad’s own primary care physician thinks there’s constant “nursing” care provided … and he has many patients who live in my Dad’s facility. “Assisted” living means you only get what you pay for from an expensive a la carte menu of services. There is nothing “assisted” built into the equation unless you pay for add-ons. At least at my Dad’s facility. Bottom line: This is a huge, largely unregulated industry about whose products/services consumers know very little.
In 2004, my Dad, then 77, was hospitalized for a leg infection that came out of nowhere over Thanksgiving. His forgetfulness (probably dementia, in hindsight) really escalated while he was in the hospital and later in a nursing home, where he was sent for rehab.
I was an investigative reporter for The Hartford Courant at the time — known for asking questions and digging up information. But when it came to my father, like many in my generation, I had a doctor-knows-best mentality. I didn’t ask many questions through his rehab stay, when he acquired a MRSA infection, became increasingly agitated and isolated (he was a very social guy, even after my Mom died), and was restrained by alarms and sedating medications. The whole experience was overwhelming.
He came back home with a list of prescriptions and a walker; that was the entire plan of care. Risperdal, Aricept, Trazodone — he hung in like a fighter for 18 months before his body and mind gave out, and one night I held his hand, told him I would be OK — and he was gone.
Not until after he died did I realize how little I knew about his care — how little I had asked. I just wanted him to get better! With no cure for dementia, and no requirement that providers seek consent for medication or treatment changes, the onus on family members to ask questions is enormous — and difficult, since most of us are juggling jobs and kids. We “turn over” our parents to the system. The experience made me realize that families aren’t part of the eldercare system unless they purposefully decide to be. And I didn’t.
A lot of the reporting I do now is an attempt to equip patients and families with information, so they will step up and ask questions, the way I wish I had.
My family's experience utterly transformed my sense of what is needed in health-care reporting. Like most Americans, I had no idea how bad our health system can be for the elderly and those with chronic illnesses until I saw it firsthand.
I didn't go out looking for health-care stories to write — this one fell into my life like a ton of bricks when my father had a major stroke at the age of 79 and I became a part-time family caregiver and medical decision-maker for two elderly and ailing parents.
Things got worse when, a year later, he was given a pacemaker without any meaningful discussion of his options or the effect it might have on his desire, over time, for a peaceful, good, and timely death.
Over the next six years he descended into dementia and near-blindness, with the pacemaker the easiest path to a natural death.
As a longtime journalist, I simply couldn't rest until I understood why his interactions with the health-care system were as unhelpful, and sometimes downright damaging, as they were.
I didn't understand then — except on the most superficial level — that our health-care system (Medicare in this case) reimburses for tests and procedures, but not for time. And the older you get, the more those tests and procedures become risky, and the more you need time, time with physicians who have known you for years.
I think first-person stories cut through the muck and mystification, the bizarre financing structures that pass as normal here (and nowhere else in the developed world), the underestimated damage done by overtreatment and the inequities surrounding our current health-care system.