The final two times Amy Vilela hugged her daughter are captured in a pair of photographs taken in June and July of 2015.
In the first photo, Amy is holding Shalynne in her hospital bed, tubes sticking out of the 22-year-old’s neck and face. Staff at a hospital in Kansas City had just taken her off life support. “It was like her body was tensing up, and it was like she was hugging me,” Amy says.
In the second photo, she’s kneeling over her daughter in her coffin. This time, Shalynne is made up with violet eyeliner, her hair combed and swept to the side.
“It was crazy, because I knew it was the last time I would touch her.”
Counterfactual history is tricky in the emergency room, where a million things can go wrong even when everything is done right. But Amy thinks that Shalynne would be alive if she’d had health insurance—or if she didn’t live in a country where health care is dominated by private insurers and profit-driven hospitals.
In 2014, Shalynne was playing Nintendo Wii with her brother when she injured her knee, busting the ACL. A few months later she drove cross-country from Kansas City, Missouri to Las Vegas, Nevada, a 22-hour drive. Soon after that, her knee and calf started swelling up.
On June 3, she was roughhousing with her boyfriend in Las Vegas, and fell on her knee again. This time it really hurt.
Amy was away on a business trip, and busy, and somewhat annoyed about having to field panicked calls. “I could hear her screaming in the background, saying it was the worst pain of her life. And I'm like... okay, then take her to the hospital.”
Shalynne’s boyfriend drove her to Centennial Hills Hospital Medical Center emergency room, where the intake staff asked for her insurance. She told them she didn’t have any. According to her boyfriend’s deposition, intake staff told Shalynne she wouldn’t have to pay if she left, obtained insurance somewhere, and then came back.
She repeatedly told them that there was something really wrong with her, complaining of excruciating pain in her calf and knee.
In their lawsuit, the Vilela family claim that once hospital staff were told Shalynne didn’t have insurance, they treated her dismissively—failing to provide adequate emergency care or screening procedures, neglecting to get her medical history, and not giving her meds for what she described as “eight-out-of-10” pain.
It’s against the law for emergency rooms to treat uninsured patients differently than insured patients. But there are ways around the law. In a 2008 op-ed, Dr. Manoj Jain described how doctors, who do, after all, expect to be paid for their work, conduct “wallet biopsies” and discriminate against uninsured people when they need emergency care. The 2010 Affordable Care Act was supposed to fix that by drastically reducing the ranks of the uninsured. But 9 percent of Americans still lack health insurance, thanks in part to Republican governors’ refusal to expand Medicaid in their states.
The ACA was also supposed to lift the strain on emergency rooms, often the only option for uninsured people, but research shows that ER visits have not fallen, leaving many emergency rooms strained. “We are seeing, in effect, medical refugees,” wrote Sudip Bose, an ER doctor, earlier this month.
Amy suspects that in Shalynne’s case, the ER staff (the intake staff; Shalynne never saw a doctor) made some assumptions about her daughter because she told them she didn’t have insurance. Another factor, Amy believes, is that the hospital staff thought she was Hispanic; they marked her ethnicity as Hispanic, although Shalynne was actually half black and half white, while her boyfriend, who had brought her to the hospital, was black.
But if they thought that Shalynne was a “freeloader,” they were wrong. She was working two jobs and studying to be a nurse. Like many young people, she was occupied with life transitions that meant she didn’t prioritize health insurance. She was between careers and ending a marriage (the reason she wasn’t on her parents’ insurance). But she was working hard to support herself.
“She was a very, very loving and caring person,” Amy says. “Full of life. Really fun. Hard worker. Just a good kid.”
One of Shalynne’s previous jobs had been in a nursing home, and she got letters from her patients’ families. “The children of the people she was taking care of [would write] thanking her for being so empathetic and kind. She would sit and talk with the nursing home patients even after her shift was over."
'How Could This Happen in America?'
Since their daughter’s death it’s been painful for her family to watch the presidential debate over health care play out. To listen, for example, to Donald Trump present “health savings accounts” as the solution to America’s healthcare problems—which are plentiful and nightmarishly daunting, as anyone who’s ever tried to make sense of an astronomically high hospital bill can tell you.
On Monday, the Obama administration confirmed that premiums are likely to skyrocket by double-digit percentages next year, while in some marketplaces consumers will be left with only one insurer, which does not bode well for patients.
Trump, like congressional Republicans, says he wants to repeal the ACA, but has not offered a concrete alternative. Hillary Clinton promises to stick by it and pursue reforms: “As president, I'll defend the Affordable Care Act, build on its successes, and go even further to reduce costs. My plan will crack down on drug companies charging excessive prices, slow the growth of out-of-pocket costs, and provide a new credit to those facing high health expenses.”
Amy doesn’t want to be partisan about this, because she doesn’t think this is a partisan issue. Who could possibly disagree with the idea that a 22-year-old shouldn’t die because of her health insurance status? EMTALA, the law that requires ERs to treat patients equally regardless of whether they’re insured, was passed during the Reagan administration.
But the toxic nature of the healthcare debates since the 1990s, when Hillary Clinton first tried to revamp the health insurance industry, and on through the battle over ACA, has perverted common sense. Amy thinks the hateful rhetoric surrounding health reform has created an environment of stress and distrust that contributed to her daughter’s poor treatment and preventable death.
Yet, whenever she tells her daughter’s story to anyone, whether a hardcore Trump supporter or a fan of Jill Stein, their reaction is always the same: disbelief, horror and some variation of, “Oh my god, how can this can happen in America?”
If the staff at Centennial Hills had taken Shalynne’s medical history, they’d have found out she had sickle-cell anemia trait and PCOS-induced obesity, and that she smoked cigarettes and used the NuvaRing contraceptive. These are all risk factors for deep vein thrombosis, as was the fact that she’d taken a 22-hour drive a few weeks before.
In his deposition, her boyfriend says her calf was visibly swollen and that she pointed this out to staff repeatedly. They took an x-ray (which isn’t usually used to detect blood clots). Shalynne asked for an MRI, which they refused, according to her mother and boyfriend’s depositions.
"They're not helping me, Mommy,” her daughter wailed on the phone. Shalynne felt humiliated. In the end, they told her they couldn’t do anything for her because she needed surgery and didn’t have insurance. They sent her home with a knee brace. Her calf continued to swell, and she started having trouble breathing when she climbed the stairs.
Amy still wasn’t too worried. After all, she herself had gone to the same hospital complaining of heartburn a while back and doctors had run a gamut of heart tests and an imaging scan. But Amy has health insurance, and she’s white. “If it doesn’t touch you, you don’t know about it, you know?”
When Shalynne flew back to Missouri, she started getting chest pains, but her parents thought it was a panic attack—she was only 22, after all. Then early one morning, she woke up terrified, in extreme pain and clutching her chest. Her dad called 911.
Amy finally got scared when the phone rang at 5am and it was her ex-husband, Shalynne’s father.
“I knew in my gut that it wasn’t good,” she says.
“I can still hear his voice. I’ve never heard him like this. He was saying there was an ambulance, now they say she coded, I’m thinking, she’s 22. I’m in shock, thinking, she’s probably okay, she’s probably upset or something.”
But Amy’s sister, an ER nurse, told her she’d better get to Kansas City, now. Shalynne had suffered a pulmonary embolism, a worst-case scenario where a clump of clotted blood lodges in the lungs.
When Amy arrived, Shalynne’s room smelled like blood, because she’d hemorrhaged from all the anti-coagulants pumped into her body to dissolve the clot.
“Every breath she’d take, her eyes would flutter open, and I’d say, Shalynne, please, fight. I thought, she’s young, she could make it. Fight.”
A family member Googled what it means when someone’s pupils dilate and it wasn’t good. Shalynne was put on life support, so the family could say goodbye.
“They asked us what time to pull her life support,” Amy says. “I got in the bed and I held her.”
They brought in friends and family to say goodbye, played her favorite music. “I was telling her how much I loved her.”
Doctors tried to convince Amy to leave the room as they turned off her daughter's life support but she refused. “I'm not leaving her side. I'm gonna be there with her when she leaves this world.”
One of the saddest things about it, Amy says now, is that when they looked at her phone the last thing she Googled was “symptoms of a heart attack.” She knows her daughter was probably scared and worried about whether to go to the hospital, given her lack of health insurance. She’d applied for Medicaid after her experience in Vegas; the paperwork arrived the week of her death.
“I miss Shalynne. Did they fix Shalynne’s heart yet?” her three-year-old brother asks, when he points to the vial of ashes that Amy wears around her neck.