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.
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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 began reimbursing 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.”
Emergency rooms are brutal places for the dying. Patients and their families can spend entire days waiting to be seen by a doctor. In 2013, a local news channel reported 14-hour wait times at Ben Taub, with as many as 100 people at a time filling the reception area. Terminally ill patients must describe their symptoms again and again as they pass through various levels of triage, often undergoing tests or procedures intended to lay the groundwork for treatment they know is futile. Once admitted to the hospital, they are disturbed every couple of hours by nurses checking vital signs, even if the patient has only hours to live. There are the sounds and smells of other patients, and the comings and goings of a legion of hospital workers. “You’re dying in a semi-public place,” says Nulia. “That can be very difficult for somebody who’s trying to have an environment of respect for their dying one.”
Hospitalists like Nuila try to send terminally ill patients home with as much medication as possible and some sense of how to keep their symptoms at bay. The textbook next step for insured patients, he says, is to suggest hospice so that families can get the proper care at home. But he knows that many of his patients can’t afford it. “In a way, we’ve just sort of come to accept poor outcomes for unfunded patients,” he notes. “We just say, ‘OK, let’s hope that they get hospice services, or charity hospice kicks in.’”
According to the National Hospice and Palliative Care Organization, only around 1 percent of hospice services in the United States are delivered free of charge to families who otherwise have no way to pay for them. Nonprofit hospice centers are often required to provide some charity care, but there are no government guidelines as to who should receive it or how much of it should be available in a given geographical area. One-fifth of all hospices nationwide provide no charity care.
Nuila estimates that Ben Taub is able to connect unfunded patients with charity hospice only about half the time, though Harris Health doesn’t officially keep track of that number. It is rare for charity care to be flat-out unavailable, but for indigent terminally ill patients who often have only days to live, the wait time—commonly four to six weeks—is as good as nothing. When they can’t get a patient into hospice, the already overworked doctors, social workers, and case managers at the hospital do their best to piece together the next-best thing.
Alexie Cintron is one of those doctors. A palliative-care specialist who provides serious-illness consultations for hospitalized patients at Ben Taub, he also runs an outpatient palliative-care clinic for patients who are staying at home. Provided the patient is covered by a Gold Card and can make it to the clinic to see him, Cintron can show family members how to care for their dying loved one and send them home with equipment like a hospital bed or a bedside commode, and they can get prescriptions filled through the system’s own pharmacy at Ben Taub.
“Essentially, I’m kind of a hospice doctor by default,” Cintron says. “We can’t find them hospice, we don’t provide hospice as a system, and so I’m the fallback.” But the help that Cintron provides is a far cry from the comprehensive and consistent care provided by hospice, and he and the nurse practitioner he works with can stretch their time only so far. “Many times we struggle with being able to support the family enough so that we try to keep this patient from bouncing back to the hospital in the next week or so.”
For poor families, the difficulty of providing good care for their loved one often stretches far beyond the health-care system itself. “If they have to take three different buses in order to get to our clinic, they might not be able to make it in time [for an appointment],” Cintron says. Money is often an issue—even with financial assistance from the county, which can lower the cost of filling a prescription to as little as $8, some people are unable to afford their medicines. Then there’s the scarce resource of time. Family members have to take off work or find child care, and they must make time to keep appointments, get prescriptions filled, and apply for financial assistance. This is all before they’ve spent any time actually caring for their dying loved one.
For at least some indigent patients, however, Harris Health does provide something akin to hospice care in the home. Dr. Anita Major is director of the system’s geriatric house-calls program, the one that was able to visit Aquilino Portillo only once before he died. The service began in the 1980s, but has expanded its patient load fourfold since 2010 in an effort to address the need for home care in the community. It’s not hospice, she says—partly because it generally involves less frequent visits, less comprehensive support, and only serves patients who are unable to leave their homes for medical appointments—but it’s pretty close. Like many uninsured people, however, Major’s poorest patients often connect with home care only when their illness has reached a crisis point and the extremity of their symptoms requires hospitalization anyway. “The problem is we meet them and, you know, 10 days later they’ve died,” Major says. “And we really should have met them a year before that.”
But the most vulnerable population, says Major, are those who never cross paths with the system—people who may be eligible for county health services but don’t know it or can’t access them. For every family like the Portillos, who find care too late, there are likely many more who never find it at all. “I think it’s a lot more than I’m aware of,” says Major. “Those are the people that I think really are suffering, and they’re just invisible to us.”
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Nationwide, it is hard to say just how many people who want or need end-of-life palliative care are forced to go without it. One recent nationwide survey assessing the availability of palliative care in general (including for nonterminal patients) showed that, while the prevalence of palliative programs in hospitals is steadily increasing, fewer than half of the country’s rural or isolated hospitals offer the option at all, let alone to unfunded patients. Statistics on hospice itself are generally tracked through utilization by Medicare and Medicaid beneficiaries, and there is no database for how or where the uninsured access the service.
“It’s difficult to measure unmet need,” says Carol Spence, vice president for research and quality at the National Hospice and Palliative Care Organization. She adds that quantifying hospice access is complicated by its elective nature. “There’s not a defined population that should have hospice like there is for a given illness,” she says. “Hospice is a choice.” But it’s a choice many of the dying poor don’t have.
For safety-net providers, expanding access to hospice is not a simple question of funding the service itself. Though outpatient hospice services cost on average 15 times less than treating the dying in a hospital—between $100 and $200 per day for hospice versus close to $3,000 per day in a Texas public hospital—offering hospice through public systems like Harris Health would actually increase the overall cost to those systems. Public hospitals tend to have far more demand for care than they can meet, so a bed vacated by a patient transferring to hospice will immediately be filled, and the hospice patient’s care will amount to a new expenditure. Like many public-health systems around the country, Harris Health is facing a deficit this fiscal year—$8 million—even after cutting overtime for its staff and reducing the number of people who qualify for Gold Card assistance. Because these systems are struggling to fund even their preventive care, adding to their deficits to treat the already dying is simply not an option.
The underlying reality is that local safety nets can only be expected to do so much for America’s uninsured, whose real problem, especially at the end of life, is that they don’t have insurance. According to the National Hospice and Palliative Care Organization, the most efficient way to increase access to hospice for low-income patients is to provide insurance coverage to the nation’s 28 million people who currently don’t have it. “It’s better to insure people ahead of time than to subsidize safety-net care after the fact,” insists Charles Begley, a veteran health-care researcher at the University of Texas School of Public Health. “There are many very valuable, very important, very cost-effective health-care services that this limited, publicly funded health-care system cannot address.”
Not only would insurance allow indigent patients to use the same hospice providers as the more well-off, but the consistent access to primary care that comes with being insured would make them more likely to hear about the service and choose to use it earlier in their illness. At the same time, Begley adds, insurers would have a financial incentive to make hospice a more visible and readily available option throughout the health-care system. Safety-net providers could focus their resources on acute and preventive care, and everyone would be better off.
But the United States is a long way from providing insurance to all. Four of the five states with the highest uninsured rates have decided not to expand their Medicaid programs under the Affordable Care Act, or even to set up their own insurance exchanges. According to the Kaiser Family Foundation, nearly 5 million more people nationwide would qualify for Medicaid—and gain access to hospice coverage—if their states chose to expand. If Texas were to expand its Medicaid program under the ACA, it would bring in nearly $6 billion in new federal funding and insure 2 million low-income adults, nearly 400,000 of them in Harris County alone.
In the current political climate, however, that seems unlikely to happen. Texas and the other eighteen states that have refused to expand Medicaid coverage currently rely on temporary federal funding to reimburse their safety net systems for the uncompensated care of uninsured patients. While half of Harris Health’s $1.3 billion budget comes from county property taxes, for example, about a quarter of it comes from these reimbursements. (Harris Health’s palliative-care services, including the house-calls program, were either created or expanded to their current level using this funding.) US Health and Human Services Secretary Sylvia Burwell has made it clear that while the federal government won’t punish states for not expanding Medicaid, it does expect them to come up with a viable long-term alternative in return for continued funding. Policy-makers in Texas, as in other Republican-controlled states, claim they merely want the freedom to design their own indigent-care systems without federal constraints, but the Texas legislature has made no move to put a long-term strategy in place. Analysts like Begley believe that lawmakers are waiting for the results of the 2016 election to determine their next moves—and in the meantime, safety-net funding is far from secure.
The election could, indeed, be a turning point. Donald Trump, the presumptive Republican presidential nominee, has vowed to repeal the Affordable Care Act—a move that health-policy experts warn would reverse the real progress the law has made in insuring low-income Americans. The Democrats would do the opposite: Presumptive presidential nominee Hillary Clinton plans to expand the ACA toward a goal of universal coverage, while Bernie Sanders proposes placing all Americans and undocumented immigrants under a federally administered, single-payer healthcare program.
“This is another make-or-break election for the Affordable Care Act,” said David Blumenthal, president of the Commonwealth Fund, a health-care research foundation, addressing a conference at the Harvard Law School in January. At the same time, he added, “we are now, for the first time in a generation, actively debating how far left to go with health-care policy.”
But until that debate results in tangible changes in how the health-care system works, the burden of caring for those who are dying in poverty will remain mostly on the shoulders of families like the Portillos, who simply do what they can to ease their loved one’s pain when the system isn’t there to support them.
“Of course,” says Portillo, “there is another way.” And, of course, she’s right.