Commentary: When health care bills are a bigger fear than dying

Issac Bailey is a columnist for The Sun-News, in Myrtle Beach, South Carolina.
Issac Bailey is a columnist for The Sun-News, in Myrtle Beach, South Carolina. MCT

While others were celebrating Thanksgiving, Devin Pate was in the critical care unit of Conway Medical Center.

It was just a couple of days after her family made the almost impossible decision to remove the tubes helping her breathe.

Devin died after a more than 5-year fight against Gardner syndrome, a rare cancer. The life expectancy of those who are diagnosed with the disease is between 35 years and 45 years.

She was 21.

In June of 2010, when I first spoke with Devin about her family’s struggle to pay tens of thousands of dollars of mounting medical bills – because of gaps and provisions in her parents’ insurance plans and unclear and changing laws – I asked her a question.

Do you think about dying?

That question is fairly benign when it is asked of a healthy person. But I was asking it of a person battling a disease that had no cure and no effective treatment.

“I’m not afraid of death, but I’m not praying for its arrival either,” Devin told me. “I keep my eyes on God and pray every day. I’m not overly-concerned with what I acquire in this life because I can’t take it with me when I die. All I wanna keep is my faith in God because that’s what is going to get me somewhere. God will take me when He is ready, and whenever He is ready, I’ll be ready.”

Her answer encouraged me. She spoke clearly about dying, a topic for which most of us are afraid to grapple with seriously until we no longer have the capacity to speak for ourselves.

But her answer to another question unnerved me.

I asked about fear.

“My biggest fear and frustration is not having the money to pay my bills every month,” she said. “My mom helps when she can, but she has plenty of bills of her own that she struggles to pay. And she has to pay those so we can have water, electricity, and a roof over our head.”

She feared bills more than the poison that was being pumped into her veins to attack cancerous cells.

She feared bills more than the pain she had to endure. In the battle of fearing death or fearing bills, it was no contest.

Few funds target rare diseases

She had that fear because it isn’t popular to fight the not-well-known Gardner syndrome. It doesn’t induce muscle-bound football players to don long pink socks to raise awareness and funds to find a cure.

It isn’t a priority for drug manufacturers, who must consider profits before investing millions on research and development for medicine that will help only a relative few.

There are about 7,000 diseases classified as rare in the United States – only 200 or so of which have Food and Drug Administration-approved treatments.

Many of those diseases are not being researched at all.

When people undergo treatments not approved specifically for their diagnosis, “they often encounter insurance problems,” said Mary Dunkle, vice president for communications for the National Organization for Rare Disorders.

Devin underwent experimental treatments but the tumors kept coming back any way.

“And in many cases, the only research being conducted is funded by patients and patient organizations who raise money through golf tournaments, bake sales, car washes, etc,” Dunkle said. “There are some wonderful researchers at the National Institutes of Health and elsewhere dedicated to studying rare diseases but, unfortunately, most researchers are attracted to areas of study that are more likely to be funded. It’s very sad when we get calls from newly diagnosed patients and have to tell them there is no treatment for their disease and no research in progress.”

When she told me about her No. 1 fear, Devin was 19 years old and processing what it meant to have tumors – at least one the size of a Butterball turkey – growing inside her body. She was coping with undergoing numerous surgeries to remove them, only to have others grow in their place.

She was still holding onto her life-long dream to become a medical professional, maybe studying and working at the place where she received her chemotherapy, the Medical University of South Carolina.

She’d had to drop out of college when illness overtook her. She wanted to go back. She wanted to read a good book and work again at Pizza Inn, even as her hair fell out and the disease sapped more of her energy day by day.

She wanted her mother and father to have peace. She wanted her friends to not take her death too hard.

“The only thing that worries me about dying is my family and friends crying and being upset when I go,” Devin told me. “I know they will be upset because they love and care about me, but I hate to see them hurting and crying. We are none promised tomorrow.”

Eventually, Devin became so sick she qualified for disability and her parents’ private insurance gave way to Medicaid and Medicare.

Saying goodbye

When it came to the end, her friends and family gathered around her hospital bed and took turns holding her hands and touching her hair and wishing for a miracle while quietly acknowledging that the disease was about to win the war.

Her father cried and smiled as he looked into her eyes.

Her mother monitored every beat, every sound, every motion of every machine in Devin’s hospital room, desperate to hold onto the faintest of hopes that maybe – just maybe – her little girl would defy the odds and walk again and get out of that hospital alive, a little girl who had already lost a 10-year-old’s worth of weight, was in pain and not strong enough to even speak.

Her mother wondered and worried when she would have to make the call to face up to what the logical part of her mind long understood – that machines couldn’t cheat death, that her daughter had long been ready for that day, even while not welcoming it – but the rest of her wanted to deny that death was coming for Devin sooner than anyone wanted.

Everyone except Devin.

In the end, one quiet night while she laid in a hospital bed not able to turn herself over, she made it clear to her mother that she wanted to die, to go to the heaven she said she knew awaited, the heaven for which she had spent her young life preparing.

It was hard to hear, but it also was confirmation of what her mother knew, and what everyone who loved her knew.

Devin was tired. She had fought long and hard and had lived as much and as well as she knew how.

It was time.

An impossible decision

“I’m trying to stay emotionally and mentally strong because I know that is what Devin wanted me to do,” Paige Pate said. “I think of her every second. Everywhere I look reminds me of her. I will have to live the rest of my life remembering my beautiful, smart, sweet, faithful daughter. She was given to me for a reason. She touched so many lives and I am going to live my life with the same appreciation and gratefulness that my daughter inspired me to do.”

Before she could make the decision to remove the tubes helping her daughter’s nearly-lifeless body breathe, Paige wanted everyone to know that she loved her daughter, that she did everything humanly possible to turn the tide.

No one doubted her love. Everyone already knew she had left no stone unturned.

Still, having to decide to have artificial life support removed was asking almost too much.

Never mind that our demise is the most natural and certain of life’s activities, it still hurts to think you’ve given in even a second too early, even at the nadir of a journey that everyone knows must end at death’s front door.

Such decisions are nearly impossible in the emotional vortex known as end-of-life care. They are best made when the senses are calmer, the logic clearer, when death isn’t already in the air. The more of us who make them early, the better it is for us and our families.

At the end, with friends and family gathered around Devin, there was no talk of death panels or which political party cherished life more or if the private market was better than government intervention.

In the end, it was about deciding what love really meant and how best to apply it.

“She was my angel and I will always take pride in the person that she was, and for being her mother,” she said.

Most of the problems Devin had to navigate through a schizophrenic medical system came long before that day.

The problems, the bills, her family’s ability to get along and cope in the aftermath, all of that created uncertainty in Devin’s mind even as those desmoid tumors destroyed her from the inside out.

But there was one thing of which she was always certain.

“One thing I know for sure,” she told me all those months ago, “is if I make it to heaven, I will suffer no longer.”

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