As the country's highest utilizer of hospice services, Utah wrestles with opportunistic companies and the potential of mandatory perinatal hospice.

Hospice care has become big business. Providers in Utah voice commitment to their mission

As the country's highest utilizer of hospice services, Utah wrestles with opportunistic companies and the potential of mandatory perinatal hospice.

Every one of Sara Boss’ patients becomes a friend. The hospice nurse has been working across Utah for four years and realized early on that helping people face death was her calling.

“You meet people in their darkest moments, in their weakest moments, and they instantly have to trust you. It’s a lot to carry that trust of not only the patient but their families in death,” Boss says. “You don’t get a do-over in death.”

She describes the work as a calling. It wasn’t her original choice, but she was drawn to it after encouragement from her older sister, who has been a hospice nurse for over two decades.

“It does take a special individual to spend their everyday around people who are passing away,” says Matt Hansen, executive director of the Homecare & Hospice Association of Utah. He adds that the nurse shortage in the state has made hospice delivery harder. 

Boss echoes this, saying she has never had a shortage of work and balancing her clients takes focus. There’s no place for people who are jaded in hospice work, she adds, because it requires deep empathy and attention to the needs of a patient and their loved ones. If she ever began to feel too burned out and mentally removed, she would likely change jobs.

“It’s so mentally, emotionally and physically exhausting. It’s a lot of work not only caring for the patients but their families,” she says. “If you don’t take this job seriously, it’s not for you.”

This perspective, however, has become newly important in recent years. Nationally, hospice has become big business, prompting some organizations to treat patients as pure numbers designed to extract money from Medicaid. The practice has become so large that it prompted the federal government to overhaul how it inspects hospice care providers to be more rigorous in February.

Like the rest of the country, Utah is facing a somewhat unknown future for hospice work. Hospice grew from a small patchwork of nonprofit, mission-driven programs in the 1980s to a massive industry. This shift allowed for-profit hospice companies like Hospice for Utah to thrive. But it also opened up the door to exploitation, according to Misty Sargent, the company’s chief care administrator.

“Because there are so many hospice companies that are coming up everywhere, some of them are doing it right and others are not doing it right,” Sargent says. “And it kind of puts a damper on us.”

An investigation published by ProPublica and the New Yorker in late 2022 found that hospice care across the U.S. has grown from a small group of charities into a giant, $22 billion industry. In the past few decades, several for-profit companies nationwide figured out they could sign people up for hospice and receive Medicare payouts even if the patients weren’t close to death. In this program, nurses traveled far and wide to recruit as many patients as possible, signing them up even without a terminal illness.

Hospice in Utah is a very important topic. According to Hansen, the Beehive State is the country’s highest utilizer of hospice services, which he attributes to better education among healthcare providers.

Hansen says there are about 85 licensed hospice providers in the state, and many shifted from nonprofit to for-profit entities about twenty years ago. The national trend of companies trying to turn patients into steady paychecks can be seen everywhere, he notes.

“Wherever there’s money, there will be people trying to take advantage of it,” Hansen says. “I wouldn’t say that’s reflective of the industry at all. You’re not going to find people with bigger hearts.”

Sargent has been working in hospice for 23 years. Her intro was unexpected, she says, when she was helping in an elder care facility. When she had to assist a particularly upset patient, the doctor told her, “You’re either going to be able to handle it or not.”

Now, she’s seen things that “people shouldn’t have to see.” And despite that, through working with Hospice for Utah, she became enticed by assisting people as they die. She finds the experience to be beyond words, beyond explanation.

“To just know that you’ve made a difference at night, it’s worth all the extra hours, the exhaustion,” she says. “It became contagious for me; it just sucked me in.”

"You meet people in their darkest moments, in their weakest moments, and they instantly have to trust you. It’s a lot to carry that trust of not only the patient but their families in death."

One complicating factor in Utah’s hospice community is at an intersection with abortion rights. After the Supreme Court overturned Roe v. Wade last year, a key policy proposal by legislators that want to ban abortions could have a major impact on the hospice industry. While the fight over abortion in Utah has played out in recent months, a small piece of the proposed legislation would require hospice care for non-viable pregnancies.

As seen in Utah’s legislative proposal to ban abortions, there is a stipulation for what will happen if a fetus is determined to either not live through pregnancy or die shortly afterward. In the past decade, so-called “perinatal hospice care” gained traction, especially among religious groups.

Neither Hansen nor Sargent had heard about this development when interviewed but acknowledged it would change the environment for hospice care providers. Likely, it would require finding companies that can specialize in these kinds of cases. Sargent points out that several companies specialize in child hospice in the case of terminal illnesses; most others focus on adult patients.

Eleanor Sundwall, a feminist activist in Utah, finds the issue deeply personal. She took fertility treatment for two and a half years to get pregnant. She and her partner poured finances and emotions into trying to conceive for years.

“I really wanted this baby… it changed our economic status,” she says. “It was kind of an irrational process. Looking back on it, it was worth it. But the emotional toll was massive.”

She eventually got pregnant. Months later, her ultrasound showed a “single umbilical artery,” which her doctor told her was either nothing or a “whole host of abnormalities.” In the end, it turned out to be alright, and she managed to deliver her baby girl. But looking back, she says, the ability to choose how to handle the situation was deeply important to her.

“Suddenly faced with this thought that we might not have a viable child, we had already named her, we were already decorating the room,” she says. “It would have been devastating [to have lost the baby], but it would have maybe been more devastating for us to be forced to carry her and deliver her for four hours of agony … I can really understand the whole range of why people struggle with this.”

During her second pregnancy, she had a miscarriage. But it took weeks to confirm, and the process left her emotionally drained.

“Three weeks I went with this dead fetus inside my body,” she says. “And again, this was a desperately wanted pregnancy.”

It wasn’t until the pregnancy became life-threatening for Sundwall that doctors agreed to perform a dilatation and curettage, a procedure that effectively ended the pregnancy. Despite wanting the child, she says doctors wouldn’t listen to her out of fear of terminating the pregnancy.

Both Sundwall and Sargent say they can imagine hospice care for an unborn child could be a crucially important process, but it needs to be chosen by the family in order to be effective. If the state forces a woman to have a nonviable baby in order to prevent an abortion, they say, it can expose the woman to deep trauma against her wishes.

“To force a woman to carry a nonviable pregnancy is such an act of violence that there is no program, no palliative care that could ever make up for it,” Sundwall says. “It’s like wrongfully convicting somebody of a crime, putting them on death row and then offering them free yoga classes to help them deal with the stress.”

Sargent says if the law goes into effect, it will be crucial that the hospice providers are educated on how to handle that specific scenario.

“I’d also want to know that that hospice company knows what they’re doing because this is a completely different type of hospice,” Sargent says.

As a result of her personal experiences, Sundwall says she doubts that the proposed legislation regarding perinatal hospice results from a desire to control the decision-making process during complicated pregnancies.

“This is not going to be a kindness,” she says of mandatory perinatal hospice.

Developments like these leave an increasingly important aspect of U.S. healthcare in a complicated position. Whether it’s perinatal hospice care or schemes to milk Medicaid, Hansen and Sargent remain optimistic about their industry while criticizing companies that abuse this practice.

“So many [hospice providers] are trying to grow so fast, and they do whatever it takes to get there. I’m not saying it’s everyone … but then Medicare has to tighten their rules, and it ruins things for the rest of us.”

Both Hansen and Sargent point to the dedication of people within their field and express hope that federal legislation to better regulate opportunistic companies would help stabilize the environment.

“We have a lot of great providers … Utah’s a great mix,” Hansen says. “I think it’s a philosophy more than anything, that we realize that hospice isn’t about the end of life; we see it more about quality of life.”

Hansen says he’s not aware of exploitative companies trying to take advantage of hospice in Utah. “But we’re vigilant,” he adds.

Jack Dodson is a reporter and documentary filmmaker most recently based in Palestine-Israel from 2018-2022. He has reported for Vice, BBC, The Intercept, Middle East Eye, among many others. He has a master’s in investigative journalism and documentary from Columbia Journalism School and a bachelor’s degree from Elon University in rhetoric.