16 Weeks…

This post is in honor of my sister-in-law, whose life was far too short, and lost to us by the thief called cancer.

My sister-in-law just passed. She was 53 years old. Her name was Cheryl.

She had been going to her doctor for the last six years complaining about being in pain and feeling uncomfortable. She was told she had fibromyalgia, given prescriptions, sent to specialists and still no solution.

• 16 weeks ago, she was diagnosed with cancer in her lungs, liver and throughout her body.
• 16 weeks ago she was given a death sentence.
• 16 weeks ago she was put on chemotherapy. We don’t know why, as it was far too late for a cure.
• 17 weeks ago she was planning her retirement in the next few years.
• 17 weeks ago she had just celebrated 26 years of marriage to my brother.
• 17 weeks ago her whole life was in front of her.
• 16 weeks ago our family faced the hardest news of our lives.

We don’t know why it took all this time for her doctors to finally order some basic tests. Like a simple chest x-ray. She was a smoker, wouldn’t that be a standard thing?

Patient Care 

She had a primary care doctor, she had specialists. But her care wasn’t coordinated and it seems she sunk in an ocean of patients clamoring for a doctor’s attention. Her symptoms didn’t stand out among the massive patient load of her well-meaning care team.

She did everything the doctors told her to do for six years. And when they finally did the tests she needed, they found her riddled with cancer. And then the countdown started.

• 16 weeks of living in a swirl of disbelief, anger, sorrow, fear, and pain. And her pain kept getting worse.
• 16 weeks of seeing all your plans for the future thrown out the window in a crumpled pile of unfulfilled dreams.
• 16 weeks to prepare to face the end.

Every day is precious, every breath a joy. We don’t know what tomorrow brings, and this loss brings me face to face with the reminder of enjoying every moment.

The health care system seemed to fail her. We don’t know all the reasons why. Maybe her care team was overworked, scrambling to give adequate care and attention to too many patients. Maybe they were just too busy to realize she needed some very basic tests six years ago – tests that might have caught her cancer early enough to treat it.

Hug Often 

That doesn’t matter to my sister-in-law now, but I hope there are lessons to be learned from her experience so this doesn’t happen to anyone else.

• 16 weeks changed our family forever.
• 16 weeks ended many of our family’s hopes.
• 16 weeks isn’t enough time to say goodbye to your loved ones or your life.

Hug the people you love, enjoy every moment – and listen closely when someone mentions a chronic health problem that doesn’t seem to be improving. I should have listened more intently to my sister-in-law, I should have asked more questions.

We all need to advocate for those we love so they don’t face a calendar that only extends 16 weeks into the future…or even less.  

I know that doctors, nurses, administrators, and insurance companies are working every day to protect our health. But it’s clear that the way our health care system is structured is making it more and more difficult for compassionate caregivers to give each patient the time and attention they deserve. We have to stop treating health care as a volume business.

Doctors and other care professionals want to heal people. We need a system designed around patients and focused on their needs.

This is why I continue to be passionate about what we are doing at Blue Cross and Blue Shield of North Carolina to create new ways of providing and paying for health care. Our Blue Premier payment model gives providers incentives for more efficient, effective care that can address health problems before they become chronic or even deadly.

Our alliance with Aledade is helping primary care doctors spend more time with each patient, moving away from the assembly-line atmosphere that makes personalized care nearly impossible.  

Our commitment to addressing drivers of health means taking a broader look at our overall well-being, examining the environmental and social factors that mean some North Carolinians don’t have a fair chance at a lifetime of good health.

There are too many families that have a story like Cheryl’s, too many 16-week farewells. Our family is heartbroken, but Cheryl’s passing has inspired me to work even harder to help build a health care system that can give everyone the kind of attention she needed.

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