"What Happens When the System Says You're Not Worth Saving?"
I stare at the blinking cursor, hands frozen on the keyboard, unsure of how to begin describing this nightmare. The knot in my stomach tightens with every phone call, every update. Each new piece of information only deepens the pain.
The past fifteen days have taken a tremendous toll on my family, and the weight of it is only growing heavier.
My sister is very sick.
No — terminal.
What’s happening to her is beyond illness. An aggressive Glioblastoma is slowly erasing who she is, piece by piece. It’s a cruel, consuming cancer that’s taken hold of her frontal lobe. Though only discovered two weeks ago, it had been lurking in silence for months — likely longer.
She had a seizure at work in June — serious enough that she was life-flighted to a trauma center. But because she had a history of seizures as a child, doctors chalked it up as unrelated and only performed a basic scan. It missed the tumor entirely. An MRI wasn’t done until months later. And now... now the tumor has grown large and strong.
She is 54. Independent. Living alone. But not anymore — not truly. The tumor has stripped her of basic life skills: she forgets to eat, to take medications, to do even the most routine things. She's exhausted constantly. A recent ER visit confirmed that she cannot care for herself alone.
Her care team has confirmed it's either a Grade 3 or Grade 4 Glioblastoma. The plan is radiation and oral chemotherapy to slow it down. She's on steroids now, which have restored some of her ability to speak and understand.
But here’s the cruel twist: the treatment will be outpatient only.
She lives alone.
She can't remember to eat or take pills — and chemo will likely induce seizures.
How is outpatient treatment even an option?
We, her family, suggested she stay in a skilled nursing facility during treatment — just until she completes radiation and chemotherapy safely. That would ensure she’s supervised, medicated correctly, and protected. It seems like a logical, humane solution.
But we were told no.
Because she’s not 65, she doesn't have Medicare. Her private insurance doesn’t come close to covering the cost of skilled care. Every nursing home we've approached has declined. One administrator described it as “being upside down in a car.” The care is too expensive, the reimbursement too low, and her case isn't profitable.
They won’t accept her — unless she declines treatment and enters hospice.
Yes, you read that correctly. If we can get her to say she no longer wants to fight, if we can accept that she's actively dying, then she can have a bed. Then she becomes "worthy" of care.
They’ll welcome her with open arms... in her final days.
But what if those final days don’t come soon?
What if she has months of suffering left?
Where is the dignity in this system?
We were even told that even if we could sell her home or assets to cover costs, it would take too long. Too much red tape. No time to spare. And so, our options have collapsed.
We’ve seen people lose everything from this kind of cancer. We’ve read the end-stage descriptions. We know what’s coming. The idea that there's any “comfort” at the end is wishful thinking — a cruel fantasy in this case.
And so, we ask:
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What happens to people like her — too young for Medicare, too ill for independent life, too poor for private pay?
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What kind of country allows you to suffer simply because your death isn’t yet "cost-effective"?
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How many more people are quietly cast aside in this way?
We’re not asking for a handout. We’re asking for time. Dignity. Compassion.
Where has it gone?