Shedding New Light On Hospice Care

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Woman and caregiverEarlier this year, Kathy’s 86-year-old mother was hospitalized in Colorado after a fall. As she rushed to her side, Kathy asked for a consultation with a palliative care nurse.

“I wanted someone to make sure my mother was on the right medications,” Kathy said.

For all her expertise — Kathy Brandt advises end-of-life organizations across the country — she was taken aback when the nurse suggested hospice care for her mother, who has advanced chronic obstructive pulmonary disease, kidney disease and a rapid, irregular heartbeat.

“I was amazed — really?” Kathy said, struggling with shock.

It’s a common reaction. Although hospices now serve more than 1.4 million people a year, this specialized type of care, meant for people with six months or less to live, continues to evoke resistance, fear and misunderstanding.

“The biggest misperception about hospice is that it’s ‘brink-of-death care,’” says Patricia Mehnert, a longtime hospice nurse and interim chief executive officer of TRU Community Care, the first hospice in Colorado.

In fact, hospice care often makes a considerable difference for those with months to live. “When someone is further out from death, we can really focus on enhancing their quality of life,” says Rachel Behrendt, senior vice president of Hospice of the Valley, which serves the Phoenix metropolitan area.

New research confirms that hospice patients report better pain control, more satisfaction with their care and fewer deaths in the hospital or intensive care units than other people with a similar short life expectancy.

What should seniors and their families, the largest users of hospice care, expect? It’s fairly well understood that patients forgo curative therapies in favor of comfort care when they enter hospice. Here are additional features:

Four Levels Of Care

Hospice providers are required to offer routine care in patients’ homes (this includes seniors who reside in assisted living or nursing homes); continuous care at home for people with out-of-control symptoms such as pain or breathing problems; inpatient respite for families that need a break from caring for a loved one; and general inpatient care for medical crises that cannot be handled in any other setting.

With continuous care, a nurse must be on-site in the home for at least eight hours a day, helping to bring symptoms under control. Usually, this will happen in one to three days. Respite care has a maximum limit of five days.

Some hospices have their own general inpatient facilities and “it’s a common misconception that patients are sent to inpatient hospice to die,” says Jean Cohn, clinical manager at Montgomery Hospice’s inpatient facility, Casey House. “In fact, we’re frequently fine-tuning patients’ regimens in inpatient hospice and sending them back home.”

Intermittent Care At Home

Routine care at home is by far the most common service, accounting for about 94 percent of hospice care, according to the latest report from the National Hospice and Palliative Care Organization.

While services vary depending on a patient’s needs, home care typically involves at least one weekly visit from a nurse and a couple of visits from aides for up to 90 minutes. Also, a volunteer may visit, if a patient and family so choose, and social workers and chaplains are available to address practical and spiritual concerns.

Hospices will provide all medications needed to address the underlying illness that is expected to cause the patient’s death, as well as medical equipment such as hospital beds, commodes, wheelchairs, walkers and oxygen. Typically, there is no charge for such gear, although a copay of up to $5 per prescription is allowed.

What families and patients often do not realize: Hospice staff will not be in the home every day, around the clock. “Many people think that hospice will be there all the time, but it does not work that way,” Brandt says. “The family is still the front line for providing day-to-day care.”

In assisted living, patients or their families may have to hire nursing assistants or companions to provide supplemental care, since hands-on help is limited. In nursing homes, aides may visit less often, since more hands-on help is available on-site.

Self-Referrals Are Allowed

Anyone can ask for a consultation with a hospice. “We get many self-referrals, as well as referrals from family and friends,” says Behrendt of Hospice of the Valley. Usually, a nurse will visit and do a preliminary assessment to determine if a person would qualify for hospice services.

To be admitted, two physicians — the patient’s primary care physician and the hospice physician — need to certify that the person’s life expectancy is six months or less, based on the anticipated trajectory of the patient’s underlying illness. And re-certification will be required at regular intervals.

A Person Can Choose Their Physician

A person has a right to keep their primary care physician or they can choose to have a hospice physician be in charge of their medical care.

At JourneyCare, the largest hospice in Illinois, “we prefer that the patient retains their primary care physician because that physician knows them best,” says Dr. Mark Grzeskowiak, vice president of medical services.

These arrangements require close collaboration. For instance, if a nurse observes that a patient with heart failure is experiencing increased shortness of breath, JourneyCare staff will get in touch with that patient’s primary care physician. The physician is responsible for altering the treatment plan; the hospice is responsible for implementing that plan and giving clear instructions to the patient and family.

Concerns About Medications

“There’s a misconception that a person is going to be medicated to a highly sedated state in hospice,” says Dr. Christopher Kerr, chief executive officer and chief medical officer for Hospice Buffalo Inc. in upstate New York. “The reality of our primary goal is to increase quality wakefulness. Managing these medications is an art and we’re highly experienced.”

Family caregivers are on the front line since they are responsible for administering pain medications such as morphine. “Absolutely, there’s a great deal of fear and anxiety around all the issues associated with giving medications,” says Cohn of Montgomery Hospice. “We try to reassure caregivers that the doses we start with are very small, monitor how the patient reacts, and go deliberately slow.”

Because most hospice stays are short — the median length is only 17 days — and because the diversion of painkillers from people’s homes is a risk, doctors have begun writing prescriptions for a week or two at a time, says Judi Lund Person, vice president of regulatory and compliance for the National Hospice and Palliative Care Organization. If concerns exist, hospices can have a lockbox for medications sent to the home.

Discharges Are Possible

Estimating when someone is going to die is an art, not a science, and each year hundreds of thousands of hospice patients live longer than doctors anticipate.

If physicians can document continued decline in these patients — for instance, worsening pain or a noticeable advance in their underlying illness — they might be able to re-certify them for ongoing hospice care. But if the patient is considered stable, they will be discharged, various experts say.

In 2015, nearly 17 percent of hospice patients were so-called live discharges, according to a report from the Medicare Payment Advisory Commission. Two days before a discharge, hospices are required to give the patient or family members a Notice of Medicare Non-Coverage. Expedited appeals of discharge decisions can be lodged with a Medicare quality improvement organization.

There are no regulatory requirements governing what hospices should do to facilitate live discharges. Some hospices will spend weeks helping patients make arrangements to receive medications, medical equipment and ongoing care from other sources. Others offer minimal assistance.

At The Very End

Almost 1 in 8 hospice patients do not get visits from professional staff during their last two days of life, according to a study published in JAMA Internal Medicine last year. And this can leave families without needed support.

Some hospices have responded by creating programs specifically for people who have a very short time left to live. “We’ve put together a special team for people who are expected to live 10 days or less because that requires a different kind of management,” says Ann Mitchell, chief executive officer of Montgomery Hospice. “Instead of a nurse for every 15 patients, a nurse on this team will have five to six patients and a social worker is available seven days a week.”

“One-third of our patients are here for less than seven days and often we receive them in a crisis,” says Kerr of Hospice Buffalo. “We’ve had to re-purpose our services to address the urgency and complexity of these patients’ needs and that means we have to be ever more present.” Across the board, Hospice Buffalo requires that patients be seen within 24 hours of an expected death.

The Physician and Impact of Patient Expenses

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Doctor Smiling PoseFamily practitioner Mark Ebell was 28 when he moved from a prosperous part of Michigan to practice family medicine at a community health center in the tiny Georgia town of Colbert. 

Although many of the conditions he treated were much the same in the two states, his patients in rural Georgia lived vastly different lives from those he cared for at the University of Michigan Medical Center.

“All of a sudden I went from a mostly insured population to a mostly uninsured or Medicaid population,” recalls Ebell, “so it was a real learning experience for me to have to think, ‘OK, I can’t use those expensive drugs anymore.’ ”

Ebell’s medical education had emphasized the scientific aspects of medicine: the electrophysiology of the heart, the biochemistry of elevated cholesterol, the battle between virus and host cells in HIV/AIDS.

When it came to clinical training, he and his classmates had learned how to take histories and perform physical exams. The economic realities of patients’ lives rarely came up, and medical students did not focus on how much their patients would be charged for diagnostic tests, surgical procedures or medicines.

In Georgia, he was suddenly dealing with a lot of poor patients, and their economic circumstances had to be taken into account. It was a kind of culture shock.

That was 30 years ago.

Today, most medical schools and residency programs say they are training future doctors to think about costs as well as medical indications when they consider what to recommend to patients.

According to a 2015 survey conducted by the Association of American Medical Colleges, 144 out of 145 U.S. medical schools now require students to study the health care system and health care financing in order to graduate.

At the Augusta University/University of Georgia Medical Partnership, Ebell teaches two such courses. First-year med students study community health, and second-year students focus on health at the population level. Both modules draw on Ebell’s experience as a physician and his expertise in epidemiology, which is what he now teaches at UGA’s College of Public Health.

Doctors’ bad mental habits

The classroom lectures, on how patients’ finances affect their care options, may not be sinking in as hoped.

Ruth Lewit is a fourth-year student at the AU/UGA medical campus in Athens. She studied cost and insurance issues two years ago, but says those topics did not really hit home with her until she did a clinical rotation in a local private practice last year.

“They can teach us as much as they want the second year,” said Lewit, “but until you actually see it in action, so much of that doesn’t even make sense to you.”

She says the lessons about health care costs and insurance might be more effective if they were moved to the third or fourth year of med school, when students spend more of their time dealing with actual patients. “It’s easier to conceptualize it once you’re in the clinical setting,” Lewit said.

Unfortunately, many of the clinicians that medical students work with during their rotations may not be setting the best example when it comes to prescribing affordable treatments or medications.

The conventional wisdom is that many doctors are clueless about how much a test, a treatment or a procedure will cost. That’s largely true, Ebell says, because many doctors never see the bills and reimbursement transactions that are processed by their office staffs.

“A big problem is that physicians don’t know the cost of what they’re prescribing,” Ebell said. “They are often shocked when they hear that many of the new drugs for diabetes are $300 to $600 per month.”

There’s another, psychological reason why doctors aren’t attuned to cost, says internist James Pippim, co-director of a new internal medicine residency program at Piedmont Athens Regional.

All medical students spend some of their early clinical training in an emergency room, where the law requires that all patients receive the treatment needed to stabilize them, regardless of their ability to pay. Future doctors develop what Pippim calls a “treat first” mentality.

That well-meaning mindset often carries over into non-emergency, routine care settings, where it is often not practical. “Most places offer services first and then figure out the way to get paid,” Pippim said.

Just as physicians cannot assume an insurer will pay, they cannot assume that the prescription they wrote will actually be filled.

Pippim and the residents he supervises see this reality all the time:

“It’s only on repeat visits that patients say to us, ‘Oh, I never filled that prescription.’


‘Because I couldn’t afford it, because I had to choose between feeding my children and buying my medication.’ 

With large companies seeking to merge and benefits changing all the time, the field of insurance can be bewildering. It’s hard for anyone to know all the intricacies of coverage and what they mean for an individual’s treatment. Pippim admits that he and his experienced colleagues are learning alongside their residents.

Unless there is a way to guarantee affordable, high-quality care for all patients, training medical students and residents to talk with patients about money as well as their health is a necessary piece of the puzzle.

“I think that with more emphasis placed on primary care needs and primary care physicians,” said Pippim, “the more people we’re likely to reach, and the less expensive health care will become overall.”


Accountable Care Organizations: Explained

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Doctor Smiling PoseOne of the many ways the Affordable Care Act seeks to reduce health care costs is by encouraging doctors, hospitals and other health care providers to form networks that coordinate patient care and become eligible for bonuses when they deliver that care more efficiently.

The law takes a carrot-and-stick approach by encouraging the formation of accountable care organizations (ACOs) in the Medicare program. Providers make more if they keep their patients healthy. About 6 million Medicare beneficiaries are now in an ACO. An estimated 23.5 million Americans are now being served by an ACO. People may even be in one and not know it.

While ACOs are touted as a way to help fix an inefficient payment system that rewards more, not better, care, some economists warn they could lead to greater consolidation in the health care industry, which could allow some providers to charge more if they’re the only game in town.  

Here are answers to some common questions about how they work:

What is an accountable care organization?

An ACO is a network of doctors and hospitals that shares financial and medical responsibility for providing coordinated care to patients in hopes of limiting unnecessary spending. At the heart of each patient’s care is a primary care physician.

Think of ACOs as buying a television. A TV manufacturer like Sony may contract with many suppliers to build television sets. Like Sony does for TVs, an ACO brings together the different component parts of care for the patient – primary care, specialists, hospitals, home health care, etc. – and ensures that all of the “parts work well together.”

In most health systems today, many patients are getting each part of their health care separately. ACOs, like the television, work better as one component rather than assembling a patchwork of services.

Why did Congress include ACOs in the law?

As lawmakers searched for ways to reduce the national deficit, Medicare became a prime target. With baby boomers entering retirement age, the costs of caring for elderly and disabled Americans are expected to soar.

The health law created the Medicare Shared Savings Program. In it, ACOs make providers jointly accountable for the health of their patients, giving them financial incentives to cooperate and save money by avoiding unnecessary tests and procedures. For ACOs to work, they have to seamlessly share information. Those that save money, while also meeting quality targets, keep a portion of the savings.

In Medicare’s traditional fee-for-service payment system, doctors and hospitals generally are paid for each test and procedure. That drives up costs, experts say, by rewarding providers for doing more, even when it’s not needed. ACOs don’t do away with fee-for-service, but they create an incentive to be more efficient by offering bonuses when providers keep costs down. Doctors and hospitals have to meet specific quality benchmarks, focusing on prevention and carefully managing patients with chronic diseases. In other words, providers get paid more for keeping their patients healthy and out of the hospital.

How do ACOs work for patients?

Doctors and hospitals will likely refer patients to hospitals and specialists within the ACO network. But patients are usually still free to see doctors of their choice outside the network without paying more. Providers who are part of an ACO are required to alert their patients, who can choose to go to another doctor if they are uncomfortable participating. The patient can decline to have his data shared within the ACO.

Who’s in charge — hospitals, doctors or insurers?

ACOs can include hospitals, specialists, post-acute providers and even private companies like Walgreens. The only must-have element is primary care physicians, who serve as the linchpin of the program.

In private ACOs, insurers can also play a role, though they aren’t in charge of medical care. Some regions of the country, including parts of California, already had large multi-specialty physician groups that became ACOs on their own by networking with neighboring hospitals.

In other regions, large hospital systems are scrambling to buy up physician practices with the goal of becoming ACOs that directly employ the majority of their providers. Because hospitals usually have access to capital, they may have an easier time than doctors in financing the initial investment, for instance to create the electronic record system necessary to track patients.

If I don’t like HMOs, why should I consider an ACO?

ACOs may sound a lot like health maintenance organizations. Some people say ACOs are HMOs in disguise. But there are some critical differences – notably, an ACO patient is not required to stay in the network.

ACOs aim to replicate “the performance of an HMO” in holding down the cost of care while avoiding “the structural features” that give the HMO control over [patient] referral patterns.

In addition, unlike HMOs, the ACOs must meet a long list of quality measures to ensure they are not saving money by restrictions on necessary care.

Are ACOs the future of health care?

ACOs are already becoming pervasive, but they may be just an interim step on the way to a more efficient American health care system. ACOs aren’t the end game.

One of the key challenges for hospitals and physicians is that the incentives in ACOs are to reduce hospital stays, emergency room visits and expensive specialist and testing services — all the ways that hospitals and physicians make money in the fee-for-service system.

The ultimate goal would be for providers to take on full financial responsibility of caring for a population of patients with a fixed payment, but that will require a transition beyond ACOs.