The Devastating Process of Dying in America Without Insurance

What do people do when they can’t afford end-of-life care?

Doris Portillo keeps the door to her father’s old room closed to avoid remembering the last few months of his life. It’s a small room, barely large enough for a bed, a small bureau, and a television, all of which are long gone. This is where she, her siblings, and her nephew cared for her father, Aquilino Portillo—feeding him, lifting him out of bed to take him to the bathroom, doing their best to clean the sores that festered beneath his weight.

A naturalized citizen from El Salvador, Portillo brought her parents to the United States in 2001 and sponsored their green cards so that she could take care of them as they aged. In late 2013, when Aquilino was diagnosed with end-stage metastatic prostate cancer, she discovered how difficult taking care of him would be.

Portillo’s insurance through her employer—she works nights cleaning offices for the City of Houston—didn’t cover her father, and the family couldn’t afford to buy insurance for him. They tried to determine if he could qualify for Medicare, the federal health benefit for the aging, or Medicaid, the state-run health insurance for the poor, but were given conflicting responses depending on whom they talked to. Confused by the requirements and limited by her poor English, Portillo applied for Medicaid for her father, but never got a response. So, for the better part of a year, the Portillos carted Aquilino back and forth to the emergency room in a wheelchair, where they would wait for hours, sometimes all night, simply to have his pain medications refilled.

As Aquilino’s condition worsened, he could no longer be moved from his bed to see a doctor. His body was riddled with tumors. His legs became too heavy for him to move, and his pain became unbearable. “It was ugly, ugly and scary, to see a loved one dying,” Portillo says in Spanish. “And if that person is your father, it’s something indescribable.”

By the time Portillo found out about a small county program that sends health workers to the homes of low-income, bedridden patients, her father had been at home without pain medication for two and a half months. The nurse practitioner who came, spurred by Aquilino’s obvious suffering, rushed to order medication to make him more comfortable. Two days later, when the morphine had barely had a chance to soothe him, he was gone.

“Sometimes people die and death is sweeter,” Portillo says. “I don’t think death is ever sweet, but they suffer less. My father suffered so much, he really fought to leave us.”

Portillo is not alone. Some 28 million people in the United States do not have health insurance, and for the dying and their families, lack of insurance is devastating. Though the care needs that arise with terminal illness are simple, they are often prohibitively difficult to meet without insurance. The uninsured and their families are left to navigate public and charity end-of-life care options that vary widely across the country, if they are available at all. There are no data on how or where the uninsured access this care, and the scope of unmet need is virtually unknown. What is known is that, at the end of their lives, many uninsured people quite literally cannot afford to die with dignity.

For the most part, patients with insurance have a choice when they receive a terminal diagnosis. Some choose to exhaust all possible avenues for fighting their disease, hoping conventional treatments or experimental drugs will prolong their lives. But when treatment fails or its toll is too great, the quality of a person’s final months or weeks often matters more than prolonging them. Doctors tend to steer those patients toward hospice, the holistic form of palliative care that focuses on treating symptoms in order to make a patient more comfortable and functional as they near death.

One of the fundamental tenets of hospice care is that patients and their families will have a better experience of death if the patient dies at home, among loved ones and familiar surroundings. The actual care is fairly simple, and focuses on managing symptoms and making the most of the time the patient has left. Family members administer most of this care, with support from the hospice team (a doctor, nurses, and often a social worker, chaplain, or volunteers), whose oft-repeated motto is to “care for the caregivers.”

Hospice began on the fringes in the 1960s and ’70s, somewhat at odds with the American medical-industrial complex. Hospice for Medicare-enrolled adults can’t begin until curative treatment has been abandoned, something that’s difficult for many patients, their families, and even their doctors to do. But hospice has gained a mainstream foothold over the last few decades, as doctors and patients have increasingly accepted that “life-extending” treatments can make dying more painful, often with little or no benefit to the patient. The vast majority of hospice recipients—about 85.5 percent—access the service through Medicare, and the proportion of Medicare beneficiaries using hospice before they die has more than doubled since 2000. The Centers for Medicaid and Medicare Services recently beganreimbursing doctors for time spent explaining the benefits of hospice to their Medicare-funded patients, further encouraging hospice advocates, who see a lack of awareness as the fundamental barrier preventing patients from getting good end-of-life care.

But what about the millions of uninsured poor Americans who simply have no way to pay for that care? While Medicare, Medicaid, and most private insurers cover hospice, millions of Americans—mostly working-poor adults under 65—don’t have access to an insurance program. In most of the 19 states that have not accepted the Affordable Care Act’s Medicaid expansion, for example, qualifying for Medicaid is almost impossible unless you’re a child, pregnant, a parent on welfare, elderly, or disabled (only Wisconsin is finding ways other than the federal expansion to cover its childless adults). In these states, more than 3 million adults fall into what’s called the ACA “coverage gap”: They don’t qualify for Medicaid under the states’ rules, but make too little to qualify for federal subsidies on the government-run insurance marketplaces. To put this in perspective, in order to qualify for those federal subsidies, a household has to make at least 100 percent of the federal poverty level—about $20,000 a year for a family of three.

The country’s 11 million undocumented immigrants face particularly high barriers to accessing health care, including hospice, as they are legally barred from enrolling in any federally funded insurance program. Some 63 percent of the undocumented population goes without insurance coverage, and studies show that they tend to seek health care less in general, partly due to fears that interacting with any authority could lead to deportation.

Today, more than 76 percent of hospice patients are white, and terminally ill patients are less likely to die at home the lower their incomes. In many poor urban communities, less than 5 percent of the dying receive hospice care in the last six months of life.

Public-health systems around the country are trying to address these disparities, and Harris County, where Aquilino Portillo lived, provides a stark example of just how difficult it is for local safety nets to fill this care gap. Texas has the highest rate of uninsured residents in the country, with nearly 1 million uninsured people in Harris County alone—roughly 22 percent of its population. For employed adults under 65, that number is closer to 30 percent. The Houston area has an expansive health-care safety net that serves the poor, including many private hospitals and clinics that provide some care for free. But it’s the county’s taxpayer-funded hospital district, Harris Health, that is ultimately responsible for providing healthcare to those who can’t afford it. Like many public-health systems around the country, it struggles to handle its uninsured population while simultaneously facing perennial budget problems, due in part to the chronic poverty of its patients. Difficult decisions must be made and priorities set; only so much can be done to care for the dying when so many others need treatment.

Harris Health doesn’t offer hospice, but it pieces together something similar through in-hospital consultations, a palliative-care clinic, and the house-calls program that Doris Portillo found too late. Low-income patients can use these services with financial assistance from the county, which used to come in the form of a laminated “Gold Card,” a name that locals still use to refer to the benefit. But applying for this financial assistance takes precious time—Doris Portillo says she spent a month away from her job trying to get her father Gold Card eligibility—and many people eligible for the benefit are not able to use it. While low-income undocumented immigrants in Harris County are entitled to Gold Card assistance, for example, providing proof of residence and income to establish eligibility can be difficult, since they often share housing and work as day laborers for cash. It’s an unspoken truth in Harris County that the hospital district serves those who can pull together the correct documentation to prove their eligibility for financial assistance, those who can endure the system’s chronically long wait times, and those who can essentially coordinate their own care. Like the Portillos, many end up getting end-of-life care the only way they know how—at the emergency room.

Dr. Ricardo Nuila, a hospitalist at Ben Taub, the largest of Harris Health’s three hospitals, describes the county’s emergency rooms as a kind of revolving door for terminally ill poor people. The uninsured tend to find out about serious illnesses like cancer later than the insured, since they use primary health care less frequently and are twice as likely to postpone or go without medical care due to cost than those with insurance. This means that by the time many uninsured patients seek care, their symptoms are acute and require immediate attention in an emergency room. But even those in non-emergency condition simply see no alternative to the ER—federal law requires emergency providers to stabilize a patient’s symptoms regardless of his ability to pay. Once that’s done, the patient is usually sent home; for terminal patients, this cycle only repeats as their condition worsens.

“That’s one of the most concerning things when you’re working in the hospital and you walk through the emergency room,” Nuila says. “The patients might actually have their pain and their suffering well controlled with medications at home, but they’re in the emergency room just to get prescriptions.”

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Photo: A patient at Houston’s Ben Taub Hospital waits on a stretcher in the hallway for space in the emergency room to open up. (Reuters / Jessica Rinaldi)