Hospice in crisis
It might seem odd to talk about “innovations in dying,” but in recent decades the hospice movement has become an important new pathway for the most difficult phase of life. As American health care has become ever more high-tech and expensive, the hospice model of home-based care for terminally ill patients has enabled millions of Americans to die peacefully in their own houses, without painful medical procedures—often greatly reducing stress on both the families and the health care system.

It might seem odd to talk about “innovations in dying,” but in recent decades the hospice movement has become an important new pathway for the most difficult phase of life. As American health care has become ever more high-tech and expensive, the hospice model of home-based care for terminally ill patients has enabled millions of Americans to die peacefully in their own houses, without painful medical procedures—often greatly reducing stress on both the families and the health care system.

Now, however, the hospice model is coming under stress of its own. Some of that’s because the industry has changed, with a lot more for-profit hospice agencies and investor-owned chains, which are coming under scrutiny from regulators. But much of the stress comes from shifts in how we die, how we live—and with whom. These are big demographic changes that make the original conception of hospice harder to carry out as it was once intended.

With baby boomers aging and likely to live with serious illness for several years, understanding how best to take care of the aged and the dying is becoming an ever more pressing issue in America—emotionally, morally, and financially. “We need to address this very quickly,” said Joan Teno of the University of Washington, a prominent geriatrician who both practices and researches end of life care. “The tsunami of frail elderly people with complex multiple illnesses is coming.”

In theory, hospice would be an ideal system to deal with this tsunami. From the time it was developed in Britain in the 1960s and ‘70s, it represented a pushback against the over-medicalization of death, emphasizing comfort care and emotional support over disruptive medical interventions. It put great emphasis on family; hospice care is often delivered by close relatives rather than medical staffers. And it was originally designed with cancer in mind, at a time when cancer killed quickly.

Nowadays, however, dying itself has changed. Cancer isn’t the death sentence it was, and thanks to new waves of drugs that prolong life in late-stage disease, it can be hard to know when it’s time to stop treatment and emphasize pain relief. More than half of hospice patients have dementia, heart disease, and other slow-progressing disorders—and most of those have more than one such diagnosis, and a panoply of symptoms. That makes it harder to prognosticate just how much time someone may have left to live. Given that hospice care is generally available only to people likely to die within six months, prognosticating is important. Even to the practiced medical eye, it’s not always clear exactly when a patient is crossing that almost imperceptible line between “very sick” and “dying.”

Families, too, have changed since hospice took root in the U.S. health system. They tend to be smaller, and live farther apart. More women work–making it harder for them to take on traditional roles as full-time caregivers. And millions of old, frail Americans—divorced, widowed, or never married—now live alone without family nearby, or without family at all. The most isolated are sometimes called “the unbefriended.”

“We have different illnesses, and different social situations than the traditional hospice user,” said David Stevenson, an expert on aging at Vanderbilt Medical School.

What hasn’t changed is the basic payment system—a per diem system—and the basic regulatory framework. Hospice is largely covered by Medicare, which pays a flat daily rate—usually around $145 to $160, with some variation based on geography and length of stay. Hospices get paid more for limited spells of crisis care in the home setting (and “home” can include a nursing home or an assisted living facility) or when a patient does get inpatient hospice care, usually briefly, in a hospice house or hospice-designated bed or wing in a hospital.

No matter how good and caring the hospice team—nurses, aides, social workers and, as desired, chaplains—much of the work falls to the family. And even when the family is willing and well-equipped, as my own family was as we took care of my father with hospice in the final months of his life, it’s not so easy to die at home.

For those with less support—it can be monumentally difficult. But no less important.

“There are people who would literally rather die than leave home. And they are really left without a good option,” said Dr. Drew Rosielle of the University of Minnesota, who, like his fellow palliative care physicians, works hard to keep his patients safe at home as long as possible. “The patients who genuinely don’t have loved ones who can essentially move in with them—most of those people do not die at home.”

They end up getting care they don’t want, in a place they don’t want to be in—and it costs more. “The ER, a hospital bed or a nursing home. That is our long-term care system for people who don’t have a support system.” said Edo Banach, the new president and CEO of the National Hospice and Palliative Care Organization, who took the job knowing it’s time for some fresh thinking about hospice—and the rest of American health care.

Even strong advocates of hospice know that it’s time for changes to match the complex medical needs of today’s patients and the demographic realities of the country—as well as trends arising from long-term use of hospice in existing institutions like nursing homes. But in the near future, there aren’t a whole lot of fabulous solutions, at least not ones that don’t cost a lot of money.

This is where Washington might come in. But a comprehensive national long-term care program is so challenging economically and politically that hardly anyone in the capital even bothers talking about it. Medicaid offers long-term services and supports in the community or in nursing homes—but only to poor people, or people who become poor after spending all their money on care. Plus, congressional Republicans want to cut Medicaid, not grow it. The Obamacare repeal plans would take hundreds of billions from Medicaid, raising questions about how America plans to pay for its elder care as that bill rises.

By default, improvisation becomes policy. “We spend a lot of time cutting and pasting,” said Dr. Christian Sinclair, a former president of the American Academy of Hospice and Palliative Medicine, who is now practicing mostly outpatient palliative care at the University of Kansas Medical Center. And patching together care from friends, neighbors, some volunteers from church, is an increasingly inadequate response to the tidal wave of baby boomers now growing old. Can it be fixed?

IN SOME WAYS, hospice is a throwback to how we died before the surge of medical machinery and ICUs, and it can seem jarring that the movement would take root in contemporary America at all. When patients elect hospice, they must usually give up on curing or containing their disease—a difficult decision to make in a system that dangles the promise of a medical fix just within reach. In practice, people often turn to hospice for only a handful of days, at the very end, after using up a lot of expensive high-tech care that may have drawn out death more than it extended life.

Once they do elect hospice, a whole different philosophy of care begins. It’s more than easing physical pain and managing symptoms, though there’s that. It’s built around team-based care, both physical and emotional, and it’s intended to support the family as well as the patient. Surveys over the years, as well as Medicare’s new “Hospice Compare” quality project, have found high satisfaction rates with hospice care.

LEFT: Ann Mitchell, CEO of Montgomery Hospice House, sits on a bench in Rockville, Maryland. Mitchell has spent years trying to make hospice more humane. RIGHT: A memorial walkway at Montgomery Hospice House. | M. Scott Mahaskey/POLITICO

But dying people can require companionship around the clock—and the paid hospice team isn’t there 24/7, not even close. Families—or home aides when a family can afford to hire them—fill the gap. The care is complex and intensive, not in the sense of “intensive care,” but hands-on intense. “It’s a person who is dying,” said Ann Mitchell, the CEO of Montgomery Hospice outside Washington, a veteran of hospice since its early days. “That takes a lot of care and a lot of time.”

Family support is so crucial that some hospices won’t even try to arrange home care for someone on their own; the last big survey of hospices, conducted a decade ago, found that more than one in 10 hospices refused to take on a patient without a family caregiver. But most doctors and hospices work to keep that patient at home, safely. “We try to have a plan in place,” said Dr. Holly Yang, a hospice and palliative care physician at Scripps Health in San Diego, who like the other physicians interviewed for this article is engaged in both patient care and public policy.

Patients who are mostly on their own may do OK for a while, but decline is inevitable. They may not be able to prepare their meals, feed themselves, get out of bed—or manage their meds. They may experience acute pain, disorientation, shortness of breath. And when that happens, instead of calling the hospice nurse, the instinct is to call 911.

Even if the hospice patient who is rushed to the hospital ends up back home, all those transitions likely made things worse. Care gets disrupted, protocols get changed, mistakes get made—and costs rise—with each handoff. “It impacts the quality of care,” said Teno, the geriatrician, who has studied care transitions extensively and who has been a medical director in nursing homes and hospice. “It’s crying out for someone to fix it.”

If the Medicare agency and Congress aren’t diving into reinvention of hospice, doctors and policy experts have some ideas of their own—though not always with clear-cut ways to pay for them. By and large, they are still in the “floating ideas” stage, not agenda items for Congress or the Medicare agency.

Some physicians interviewed suggested tiered payments, which would replace the one size fits all daily rates. In other words, they could pay more for a patient with a particularly complex condition, or for a patient who can’t stitch together the necessary social support system. Another idea is to create more flexibility on how Medicare defines “continuous care”—a higher level of care for which the hospice gets a higher rate. Right now “continuous care” means an eight-hour block of hospice-provided care. Some doctors think paying for smaller blocks, like four hours, might be more practical.

One researcher mused about shifting the myriad quality markers that Medicare and private health plans now require so they have a sharper focus on end of life, and rewarding those that do it well. Hospitals measure and refine, for instance, how quickly they can get a heart patient in to the room for cardiac procedures; why not do the same for getting a dying patient into the most appropriate and compassionate setting?

One doctor suggested that four or five hospice patients could live together, sharing the cost of caregivers, who know to quickly summon the hospice nurse, not an ambulance, when things get tough. It wouldn’t be the same as staying “at home” for patients who really wanted to live out their days in their own homes. But it could be a home-like substitute, and there are scenarios where the arrangement could make the caregiving costs more affordable for some.

Some experts see promise in using more inpatient care, whether in a freestanding “hospice house”—a more formal and regulated setting for care—or a section of hospital or nursing home. Hospice houses are more common than they were 20 years ago, but they are still not the norm. By 2015, the proportion of deaths in America that took place under inpatient hospice care rose to 8 percent, from zero in 1999, according to research recently published in Health Affairs. With soup on the stove, cookie dough in the fridge, and places for those who do have family and friends to gather, such houses don’t feel institutional. Mostly they’re used for a brief stay to control a crisis, or for a few days of respite care for family caregivers. But some who have studied hospice extensively, like Elizabeth Bradley, a health policy expert who recently became president of Vassar College, say it’s worth thinking about how this inpatient setting can take on a bigger role, at least toward the end. “It makes a lot of sense,” she said. “It’s not home—but it’s homelike. And it’s set up to pass you through the end of life.”

It’s appealing, but comes with its own cultural and financial challenges. For one thing, it’s not how most hospices, still attuned to home-based family care, see their mission, at least not now. Nor can they afford it under the equally home-centric Medicare fee structure, unless they have a lot of philanthropic support. “We’ve hit a few cases where we didn’t feel safe with the patient home situation, where we brought them in for a respite stay and we added routine days onto that because there was no safe discharge plan,” Dr. Patrick White, chief medical officer of BJC Hospice in Missouri, said of the 16-bed hospice house it opened a few months ago. “But it’s really frustrating for us that financially the hospice takes a huge hit for that. It’s not economically viable.” To get Medicare to even think about paying more for the inpatient model, there’d probably have to be a crystal clear economic case that it would save health care dollars elsewhere, and not be one more big bill tacked on to the last year of life.

ONE INNOVATION THAT does help people stay at home independently is telemedicine or telecare—health care delivered remotely, over the internet or by phone. Medicare doesn’t pay for telemedicine in most settings. But it’s catching on under the per-day payments that hospice gets, and under other “value-based” or lump-sum payments that are emerging.

It has also caught the eye of the Department of Veterans Affairs, whose administrator, David Shulkin, has declared it a top priority to allow veterans to die in their homes if they wish. “I want to be able to assure every veteran that it’s their right to do so,” said Shulkin, who calls this policy his “moon shot.” He’s working on getting more paid caregivers into the home, and expanding home technology as part of the solution.

Though the recent growth of telemedicine has often come to mean fancy apps, sensors, and monitors, with hospice it can be less expensive, as simple as a regular check-in phone call from a nurse trained to pick up on red flags or stress—heading off that 911 call, said Dr. White of BJC. “It’s cheap and simple—and it’s proactive, especially for patients with lower health literacy who may not have caught a sign or symptom.” For patients at home alone, it’s a layer of protection.

A hospice patient visits with family in an outdoor courtyard at Montgomery Hospice House on Sept. 12. | M. Scott Mahaskey/POLITICO

Tech is also showing promise in helping create hospice-like end-of-life care in remote areas, where people may just live too far from the nearest hospice organization to tap into its care. In an isolated rural stretch of Northern California, Dr. Michael Fratkin, founder of a company called Resolution Care, is “virtually visiting” seriously ill patients at home with a phone, a laptop, and free teleconferencing software. Many of Fratkin’s patients have scant family support; in addition to physical illness, some are dealing with poverty, food insecurity, and homelessness. He makes in-person visits, too, as do nurses and community health workers. The care he provides is not hospice, but it’s similar, paid for by Medicaid managed care plans in California and a few big insurers.

Recalling one patient, a veteran with liver cancer who lived way out in the country, Fratkin said: “I walked him through the last eight or nine months of his life, on the land where he lived it.” Fratkin ’s already getting a lot of interest from other doctors and health organizations, and his approach would easily fit into hospice. The technology is accessible enough for patients. “I’m not that much of a geek,” Fratkin said.

Another development in medicine, embodying some of the philosophy and benefits of hospice, is the relatively new specialty of palliative care. This is an option for patients with advanced diseases, instead of or prior to hospice itself. But palliative care patients don’t have to give up curative care, like chemotherapy, so the transition is less of a rupture, and more of a gentle slope. Similarly, some hospices now offer “open access” or “concurrent care,” allowing the patient to start hospice but to keep getting “regular” treatment.

Medicare’s Innovation Center is running a multi-year test of that approach for four diseases, including advanced cancer. The idea is that patients who get the symptom management and emotional supports of hospice and palliative care, and who come to better understand their own illness, make different choices. “If we walk earlier with that patient, and he or she starts realizing the burdens of treatment outweigh the benefits. … It’s a more humane way of doing it, and I think it will save money,” said Ann Mitchell of Montgomery Hospice. That money could then be used to meet all sorts of needs we don’t pay for now—like more help at home.

On a broader level, the steps needed to create the next iteration of hospice may dovetail with the steps being taken to address the bloated, expensive American health care system. “The focus isn’t just on diagnosis and medical tests and drugs and durable medical equipment, but on meeting the patients’ whole needs. That’s really where it’s at,” said Joe Rotella, a long-time hospice doctor now working with the hospice and palliative medicine academy, which has put forth its own ideas for reform. “We’re just kind of waiting for the system to catch up.”

A raft of experiments are under way aimed at shifting how we finance and deliver care; some are advanced through the more esoteric provisions of Obamacare, the ones the country hasn’t spent eight years fighting about. Others are linked to a bipartisan new law that will change how Medicare pays physicians—with an emphasis on value of care, not volume of care. Many of the ideas being tested and explored entail more and better management of chronic diseases—the slow-motion killers that, eventually, bring people to hospice’s door.

If these experiments bear fruit, we could move toward a system where families can be supported, not exhausted. Where patients can get the holistic approach pioneered by hospice, without “giving up” on more aggressive treatment. Where patients who understand their choices can get off the conveyer belt of high-tech medicine, and find whatever balance of curative and palliative care is right for them. For both those who are surrounded by family, and the “unbefriended,” it could become a little less hard to die at home.

Joanne Kenen is POLITICO Pro's health care editor.

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