The patient, Cervantes said, was a woman from Mexico with kidney failure who repeatedly visited the emergency room for more than three years. In that time, her heart had stopped more than once, and her ribs were fractured from CPR.

The woman finally decided to stop treatment because the stress was too much for her and her two young children. She died soon afterward, Cervantes said.

Kidney failure, or end-stage renal disease, is treatable with routine dialysis every two to three days. Without regular dialysis, which removes toxins from the blood, the condition is life-threatening: Patients’ lungs can fill up with fluid, and they’re at risk of cardiac arrest if their potassium level gets too high.

But Cervantes’ patient was undocumented. She didn’t have access to government insurance, so she had to show up at the hospital in a state of emergency to receive dialysis.

Cervantes, an internal medicine specialist and a professor of medicine at University of Colorado in Denver, said the woman’s death inspired her to focus more on research.

“I decided to transition so I could begin to put the evidence together to change access to care throughout the country,” she said.

Cervantes said emergency dialysis can be harmful to patients: The risk of death for someone receiving dialysis only on an emergency basis is  than someone getting standard care, she found in research published in February.

°ä±ð°ù±¹²¹²Ô³Ù±ð²õ’Ìý, published recently in the Annals of Internal Medicine, shows these cyclical emergencies harm health care providers, too. “It’s very, very distressing,” she said. “We not only see the suffering in patients, but also in their families.”

There are an estimated 6,500 undocumented immigrants in the U.S. with end-stage kidney disease. Many of them can’t afford private insurance and are barred from Medicare or Medicaid. Treatment of these patients varies widely from state to state, and in many places the only way they can get dialysis is in the emergency room.

Cervantes and her colleagues interviewed 50 health care providers in Denver and Houston and identified common concerns among them. The researchers found that providing undocumented patients with suboptimal care because of their immigration status contributes to professional burnout and moral distress.

“Clinicians are physically and emotionally exhausted from this type of care,” she said.

Cervantes said the relationships clinicians build with their regular patients conflicts with the treatment they have to provide, which might include denying care to a visibly ill patient because their condition was not critical enough to warrant emergency treatment.

“You may get to know a patient and their family really well,” she said. Providers may go to a patient’s restaurant, or to family gatherings such as barbacoas (similar to barbecues) or quinceañeras (milestone parties for 15-year-old girls).

“Then the following week, you might be doing CPR on this same patient because they maybe didn’t come in soon enough, or maybe ate something that was too high in potassium,” she said.

Other providers, Cervantes said, report detaching from their patients because of the suffering they witness. “I’ve known people that have transitioned to different parts of the hospital because this is difficult,” she said.

Melissa Anderson, a nephrologist and assistant professor at the Indiana University School of Medicine in Indianapolis who was not involved in Cervantes’ study, said Cervantes research matches her own experience. She said that when she worked at a safety-net hospital in Indianapolis, patients would come to the ER when they felt sick. But some hospitals would not provide dialysis until their potassium was dangerously high.

To avoid being turned away when their potassium level was too low, she said, patients in the waiting room would drink orange juice, which contains potassium, putting themselves at risk of cardiac arrest.

“That’s Russian roulette,” Anderson said. “That was hard for all of us to watch.”

Anderson eventually stopped working at that hospital and, like Cervantes, has worked on research and advocacy efforts to change how undocumented immigrants with kidney failure are treated.

“I practically had to take a class in immigration to understand what’s going on,” she said. “Physicians just don’t understand it, and we shouldn’t have to.”

Providers in Cervantes’ study also worried that these avoidable emergencies strain hospital resources — clogging emergency departments when undocumented patients could simply receive dialysis outside the hospital — and about the cost: Emergency-only hemodialysis costs nearly four times as much as standard dialysis, according to a  at Baylor College of Medicine.

Those costs are often covered by taxpayers through emergency Medicaid, which pays for emergency treatment for low-income individuals without insurance. In a , Anderson and her colleagues found that at one hospital in Indianapolis, the state paid significantly more for emergency-only dialysis than it did for more routine care.

Areeba Jawed, a nephrologist in Detroit who has performed survey research into this issue, said many providers don’t understand how much undocumented immigrants actually contribute to society, while receiving few of the societal benefits.

“A lot of people don’t know that undocumented immigrants do pay taxes,” she said. “There’s a lot of misinformation.”

“I think there are better options,” said Jawed, who has treated undocumented patients both in Detroit and Indianapolis.

As a workaround, some hospitals simply provide charity care to cover regular dialysis for undocumented patients. But Cervantes argues that a better solution is a policy fix. States are allowed by the federal government to define what qualifies as an emergency.

“Several states, like Arizona, New York and Washington, have modified their emergency Medicaid programs to include standard dialysis for undocumented immigrants,” she said.

Illinois covers routine dialysis and even passed a law allowing undocumented immigrants to receive , she noted.

“Ideally, we could come up with federal language and make this the national treatment strategy for undocumented immigrants,” Cervantes said.

Ultimately, Cervantes said, providers don’t want to treat undocumented patients differently.

“At the end of the day, clinicians become providers because they want to provide care for all patients,” she said.

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Here’s a quick look at the governor’s history in terms of health policy in Indiana.

Medicaid Expansion

Pence has always been a vocal of the Affordable Care Act, even after the federal law passed in 2010 and was upheld by the Supreme Court.

But when faced with the choice of whether to expand Medicaid to cover Indiana residents who earn incomes that are 138 percent or below the federal poverty level — a key part of the ACA — Pence made a compromise. He debuted a conservative-friendly version of the expansion, one that a monthly contribution, based on income, into a health savings account. Recipients who miss a payment can be bumped to a lower level of coverage, or lose it entirely, for six months.

“It’s really been a wonderful way to move the needle both on health care access and ultimately on long-term health outcomes,” Priest said.

Pence from the right for accepting a component of Obamacare, but his conservative tweaks to Medicaid have other Republican-led states looking at that model.

HIV Outbreak

Pence from local and national infectious disease experts for his response to an urgent health crisis in Indiana. In February 2015, the state reported an outbreak of HIV in Scott County, blamed on opioid addiction and needle sharing.

It got so bad — growing to more than 80 cases in the month after the announcement, and more than 190 to date — that the CDC came to Indiana to investigate, and public health experts began calling for a needle exchange. At the time, syringe exchanges were illegal in the state and Pence was opposed to changing that, at first.

He later signed an emergency declaration allowing Scott County to start a needle exchange program. Rather than legalize such exchanges statewide, Pence signed a bill that forces counties to ask permission to start a needle exchange.

Only a few counties have done it, so far, because the process takes a lot of planning, local support and money, which the state doesn’t provide, said , a researcher with the Rural Center for AIDS/STD Prevention.

“If you’re the health department with only two part-time staff, and a full-time health director, who’s going to do this, and when is it going to happen?” Lawrence said.

Public Health Budgets

The HIV crisis also brought some attention to Indiana’s lack of public health funding in general, Lawrence said.

“I think we are dealing with the consequences of the fact that that we don’t have a strong infrastructure for public health in the state,” she said.

As governor, Pence signed legislation that Indiana’s budget for public health programs, despite the state’s many pressing public health problems. Indiana has a high smoking rate, high obesity rate, and high infant mortality rate. The state is ranked nearly last for both federal and state public health funding. According to , Indiana spends just $12.40 per resident on public health. West Virginia, in contrast, spends more than $220.

As a member of Congress from 2001 to 2013, Pence voted against funding for health programs such as the State Children’s Health Insurance Program and the Prevention and Public Health Fund.

Abortion Access

As a congressman, Pence was an early advocate for defunding , and this year, women’s health advocates have clashed with him again.

In March, the governor signed a bill that’s been cited as one of the in the U.S., barring abortion on the basis of disability, gender or race of the fetus. It also requires women to get an ultrasound at least 18 hours before the procedure and requires that the fetal remains be buried or cremated.

Some Indiana women responded by updating the governor’s office with (sometimes graphic) news on their menstrual cycles by phone and on social media with hashtag . The social media backlash mirrors , which took aim at Donald Trump last year.

The Indiana ACLU brought a lawsuit against the state’s abortion restrictions — and a judge has since blocked portions of that law. “What the state of Indiana has attempted to do here … grossly flies in the face of existing law,” saidACLU attorney .

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Sixty-two-year-old Tom Davis led us through the thousands of gravestones scattered across the cemetery. He’d been thinking about his life and death a lot in the previous few weeks, he told us. On March 22, he’d had a heart attack.

Davis said he originally planned to jot, “I want to believe people care about me.” But after his heart attack, he found he had something new to write: “I want to see my grandkids grow up.”

Others at the event grabbed a piece of chalk to write down their dreams, too, including some whimsical ones: Hold a sloth. Visit an active volcano. Finally see Star Wars.

The purpose of each gathering is to get people thinking ahead — about topics like what they want to accomplish in their remaining days, end-of-life care, funeral arrangements, wills, organ donation, good deaths and bad — and to spark conversations.

“This is an opportunity to begin to change the culture, to make it possible for people to think about and talk about death so it’s not a mystery,” said the festival’s organizer , a nurse ethicist at the Fairbanks Center for Medical Ethics in Indianapolis.

The festival included films, book discussions and death-related art. One exhibit at the  had on display 61 pairs of boots, representing the fallen soldiers from Indiana who died at age 21 or younger.

These festivals grew out of a larger movement that includes , salon-like discussions of death that are held in dozens of cities around the country, and — chalked lists of aspirational reflections that have now gone up in more than 1,000 neighborhoods around the world.

“Death has changed,” Wocial said. “Years ago people just died. Now death, in many cases, is an orchestrated event.”

Medicine has brought new ways to extend life, she said, forcing patients and families to make a lot of end-of-life decisions about things people may not have thought of in advance.

“You’re probably not just going to drop dead one day,” she said. “You or a family member will be faced with a decision: ‘I could have that surgery or this treatment.’ Who knew dying was so complicated?”

With that in mind, the festival organizers held a workshop on advance care planning, including how to write an , the document that tells physicians and hospitals what interventions, if any, you want them to make on your behalf if you’re terminally ill and can’t communicate your wishes. The document might also list a family member or friend you’ve designated to make decisions for you if you become incapacitated.

“If you have thought about it when you’re not in the midst of a crisis, the crisis will be better,” Wocial said. “Guaranteed.”

About a in the U.S. goes to end-of-life care. Bills that insurance doesn’t cover are usually left to the patients and their families to pay.

, a medical ethicist from Marian University who spoke at the festival, said advance directives can address these financial issues, too. “People themselves, in their advance directive will say, ‘Look, I don’t want to drain my kids’ college savings or my wife’s retirement account, to go through one round of chemo when there’s only a 15 percent chance of remission. I’m not going to do that to them.’ ”

The festival also included tour of a cremation facility in downtown Indianapolis. There are a lot of options for disposing of human ashes, it turns out. You can place them in a biodegradable urn, for example, have them blown into glass — even, for a price, turn them into a diamond.

“It’s not inexpensive,” Eddie Beagles, vice president of Flanner and Buchanan, a chain of funeral homes in the Indianapolis area, told our tour group. “The last time I looked into it for a family, it was about $10,000.”

“Really, when it comes to cremation, there’s always somebody coming up with a million dollar idea,” Beagles added. “If you can think of it, they can do it.”

Beagles showed us a pile of detritus from cremated human remains. He picked up a hip replacement — a hollow metal ball — then dropped it back into the ashes.

I’m a health reporter, so I know a fair amount about the things that could kill me, or are already killing me. But watching this piece of metal that used to be inside a human be tossed back onto the heap gave me pause. I’m thinking about what I might write on a “Before I Die” wall. I still don’t know — there are many things to do before I go. But I’m thinking about it a lot harder now.

This story is part of a partnership that includes , and Kaiser Health News.

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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