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.

New Federal Rules for Home Health Agencies

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Man and CaretakerHome health agencies will be required to become more responsive to patients and their caregivers under the first major overhaul of rules governing these organizations in almost 30 years. 

The federal regulations, published in January 2017, specify the conditions under which 12,600 home health agencies can participate in Medicare and Medicaid, serving more than 5 million seniors and younger adults with disabilities through these government programs.

They strengthen patients’ rights considerably and call for caregivers to be informed and engaged in plans for patients’ care. These are “real improvements,” said Rhonda Richards, a senior legislative representative at AARP.

Home health agencies also will be expected to coordinate all the services that patients receive and ensure that treatment regimens are explained clearly and in a timely fashion.

The new rules are set to go into effect in July 2017, but they may be delayed as President Donald Trump’s administration reviews regulations that have been drafted or finalized but not yet implemented. The estimated cost of implementation, which home health agencies will shoulder: $293 million the first year and $234 million a year thereafter.

While industry lobbying could derail the regulations or send them back to the drawing board, that is not expected to happen, given substantial consensus with regard to their contents. More likely is a delay in the implementation date, which several industry groups plan to request.

“There are a lot of good things in these regulations, but if it takes agencies another six or 12 months to prepare let’s do that, because we all want to get this right,” said William Dombi, vice president for law at the National Association for Home Care & Hospice (NAHC).

Home health services under Medicare are available to seniors or younger adults with disabilities who are confined to home and have a need, certified by a physician, for intermittent skilled nursing services or therapy, often after a hip replacement, heart attack or a stroke.

Patients qualify when they have a need to improve functioning (such as regaining the strength to walk across a room) or maintain abilities (such as retaining the capacity to get up from a chair), even when improvement is not possible. These services are not for patients who need full-time care because they are seriously ill or people who are dying.

Several changes laid forth in the new regulations have significant implications for older adults and their caregivers:

Patient-Centered Care

In the past, patients have been recipients of whatever services home health agencies deemed necessary, based on their staffs’ evaluations and input from physicians. It was a prescriptive “this is what you need and what we’ll give you” approach.

Now, patients will be asked what they feel comfortable doing and what they want to achieve, and care plans will be devised by agencies with their individual circumstances in mind.

“It’s much more of a ‘help me help you’ mentality,” said Diana Kornetti, an industry consultant and president of the home health section of the American Physical Therapy Association.

While some agencies have already adopted this approach, it’s going to be a “sea change” for many organizations, said Mary Carr, NAHC’s vice president for regulatory affairs.

Patient Rights

For the first time, home health agencies will be obligated to inform patients of their rights — both verbally and in writing. And the explanations must be communicated clearly, in language that patients can understand.

Several new rights are included in the regulations. Notably, patients now have a right to receive all the services deemed necessary in their plans of care. These plans are devised by agencies to address specific needs approved by a doctor, such as speech therapy or occupational therapy, and usually delivered over the course of a few months, though sometimes they last much longer. Also, patients must be informed about the agency’s initial comprehensive assessment of the patient’s needs and goals, as well as all subsequent assessments.

A patient’s rights to lodge complaints about treatment and be free from abuse, which had already been in place, are described in more detail in the new regulations. The government surveys home health agencies every three years to make sure that its rules are being followed.

NAHC officials said they planned to develop a “notice of rights” for home health care agencies, bringing greater standardization to what has sometimes been an ad hoc notification process.

Caregiver Involvement

For the first time, agencies will be required to assess family caregivers’ willingness and ability to provide assistance to patients when developing a plan of care. Also, caregivers’ other obligations — for instance, their work schedules — will need to be taken into account.

Previously, agencies had to work with patients’ legal representatives, but not “personal representatives” such as family caregivers.

“These new regulations stress throughout that it’s important for agencies to look at caregivers as potential partners in optimizing positive outcomes,” said Peter Notarstefano, director of home and community-based services for LeadingAge, a trade group for home health agencies, hospices and other organizations.

Plans Of Care

Now, any time significant changes are made to a patient’s plan of care, an agency must inform the patient, the caregiver and the physician directing the patient’s care.

“A lot of patients tell us ‘I’ve never seen my plan of care; I don’t know what’s going on; the agency talks to my doctor but not to me,’” said Kathleen Holt, an attorney and associate director of the Center for Medicare Advocacy. The new rules give “patients and the family a lot more opportunity to have input,” she added.

In another notable change, efforts must be made to coordinate all the services provided by therapists, nurses and physicians involved with the patient’s care, replacing a “siloed” approach to care that has been common until now, Notarstefano said.

Discharge Protections

Allowable reasons for discharging a patient are laid out clearly in the new rules and new safeguards are instituted. For instance, an agency cannot discontinue services merely because it does not have enough staff.

The government’s position is that agencies “have the responsibility to staff adequately,” Carr of NAHC said. In the event a patient worsens and needs a higher level of services, an agency is responsible for arranging a safe and appropriate transfer.

“Agencies in the past have had the ability to just throw up their hands and say ‘We can’t care for you or we think we’ve done all we can for you and we need to discharge you,’” Holt said. Now a physician has to agree to any plan to discharge or transfer a patient, and “that will offer another layer of protection.”

Hospice Care – Although Not Actually Dying?

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mother-and-daughter

The service of hospice care is intended for patients who are terminally ill and expected to die.

But over the past decade [as a 2014 Washington Post investigation found] the number of patients who outlived hospice care in the United States has risen dramatically, in part because hospice companies earn more by recruiting patients who are not actually dying.

Now government inspectors have turned up information about how that happens.

About one in three hospice patients were not given key information about what the choice of hospice entails at the time they enrolled, according to a report released on September 15, 2016 by the Office of Inspector General of the Department of Health and Human Services.

In their investigation, government inspectors reviewed a random sample of the documentation that patients sign to indicate they want hospice care. In many cases, the patient was not informed that electing hospice meant that they intended to forgo a cure for their terminal illness — a critical distinction between hospice care and other health services. Hospices instead provide “palliative care”- that is,  care focused on the prevention and alleviation of suffering.

“When people elect hospice care they are forgoing curative care – and it’s important for them to know that,” Nancy Harrison, one of the investigators, said in a interview.

Moreover, in about 14 percent of cases reviewed, the physician who is supposed to approve the enrollment of a patient in hospice care paid only cursory attention to the matter. They provided scant information about the patient’s prognosis, and “appeared to have limited involvement  in determining that the [patient] was appropriate for hospice care,” according to the report.

The trend is “alarming” said Jodi Nudelman, who also worked on the report.

Medicare, the government insurer, pays for the vast majority of hospice care in the United States. In 2013, it paid $15.1 billion for hospice services covering 1.3 million people. The federal government in recent years has sought to recover more than $1 billion from hospices that, according to attorneys, illegally billed Medicare for patients who were not near death.

 

Patients who are not near death are more profitable because they typically require fewer services. Hospices are paid a flat daily rate for hospice patients.

The Office of Inspector General at HHS “has investigated and is investigating hundreds of hospice fraud schemes,” a spokesman said.

The report follows the 2014 series in The Post, “Business of Dying,” that examined how hospice care, which had begun as a service provided by nonprofit groups, had changed as businesses began to provide the service.

The series reported that at hundreds of United States hospices, more than one in three patients are dropping the service before dying, a sign of trouble in an industry who’s responsibility is to care for patients until death.

With that many patients leaving hospice care alive, experts said, the hospices are likely to be either driving them away with inadequate care or enrolling patients who aren’t really dying in order to pad their profits.

It is normal for a hospice to release a small portion of patients before death — about 15 percent has been typical, often because a patient’s health unexpectedly improves. But research showed that at some hospices, and particularly at new, for-profit companies, the rate of patients leaving hospice care alive is double that level or more.

The number of “hospice survivors” was especially high in two states: in Mississippi, where 41 percent of hospice patients were discharged alive, and Alabama, 35 percent. 

The new findings by the government inspectors are part of a larger body of work by the government that, in the inspectors words, reveals “numerous vulnerabilities” and raises serious questions “as to whether Medicare is paying appropriately for hospice.”

 

 

 

 

Medicare Costs for Hospice – Officials Weigh Options

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Medicare officials are considering changes in the hospice benefit to stop the federal government from paying twice for care given to dying patients. But patient advocates and hospice providers fear a new policy could make the often difficult decision to move into hospice even tougher.

Patients are eligible for hospice care when doctors determine they have no more than six months to live. They agree to forgo curative treatment for their terminal illness and instead receive palliative or comfort care. However, they are also still allowed Medicare coverage for health problems not related to their terminal illness, including chronic health conditions, or for accidental injuries.

Medicare pays a set amount to the hospice provider for all treatment and services related to the terminal illness, including doctor’s visits, nursing home stays, hospitalization, medical equipment and medicine.  If a patient needs treatment that hospice doesn’t provide because it is not related to the terminal illness — or the patient seeks care outside of hospice — Medicare pays the non-hospice providers. The problem is that sometimes Medicare pays for care outside the hospice benefit that it already paid hospice to cover.

To reduce the chances of these duplicate payments, Medicare officials have announced that they are examining whether to assume “virtually all” the care hospice patients receive should be covered under the hospice benefit.

Medicare has been paying millions of dollars in recent years to non-hospice providers for care of terminally ill patients under hospice care, according to government reports.

The Medicare Payment Advisory Commission (MedPAC), an independent organization that advised Congress, found that in 2012, Medicare paid $1 billion to hospitals, nursing homes, therapists and other providers of services for hospice patients unrelated to their terminal illness.

The commission did not estimate how much of that was incorrectly billed and should have been covered by hospices. Prescription drug plans received more than $33 million in 2009 for drugs that probably should have been covered by the hospice benefit, according to an investigation by the Department of Health and Human Services’ inspector general.

Hospice is growing rapidly among older Americans. Of those Medicare beneficiaries who died in 2013, nearly half used hospice, double the rate in 2000, MedPAC also found. Over the same time period, Medicare spending for hospice services grew five-fold, to $15 billion.

Medicare officials initially mentioned last year that they were exploring possible changes. Concerns about duplicate payments “strongly suggests that hospice services are being ‘unbundled,’ negating the hospice philosophy of comprehensive, holistic care and shifting the costs to other parts of Medicare, and creating additional cost-sharing burdens to those vulnerable Medicare beneficiaries who are at the end-of-life,” they wrote in regulations containing this year’s hospice payment rates and other program rules. Officials have not yet issued a formal proposal.

“There will always be exceptions for people who have terminal conditions and have other conditions that need to be attended to,” said Sean Cavanaugh, deputy administrator at the Centers for Medicare & Medicaid Services (CMS). “But the majority of their services would be provided through hospice.”

Seniors’ advocates are worried that putting all coverage under the hospice benefit will create obstacles for patients. Instead, Medicare should go after hospice providers who are shifting costs to other providers that Medicare expects hospice to cover, said Terry Berthelot, a senior attorney at the Center for Medicare Advocacy, who urged the government to protect hospice patients’ access to non-hospice care.

The easiest thing for CMS to do is to say everything would be related to the terminal illness and then there would be no billing problems,” Berthelot said. But federal law, guarantees hospice patients Medicare coverage to control diabetes, blood pressure or other conditions not related to their terminal illness.

“If your blood sugar gets out of control, that could hasten your death,” she said. “But people shouldn’t be rushed off to die because they’ve elected the hospice benefit.”

Cavanaugh said the government is not trying to restrict drugs or other Medicare benefits for hospice patients.

“It’s more about getting the payment right,” he said. “The question is how to clearly circumscribe the benefit, to define what’s in the hospice benefit and what is not.”

That’s not always easy to figure out.

If a lung cancer patient in hospice slips on some ice and breaks something, the injury could have happened because the cancer has attacked the bones, making them thin and brittle, said Dr. May Al-Abousi, medical director for hospice services at University Hospitals in Cleveland. Treatment for the injury would be covered by hospice.  But the injury would not necessarily be part of the hospice benefit for someone with a terminal illness other than cancer, she said.

Medicine has no cookbook, where we can apply all-or-none rules,” she said.

Sometimes a hospice provider may not even know when a patient has gone to the hospital and there’s usually no way the hospital knows the patient is in hospice unless the patient makes that clear, said Judi Lund Person, at the National Hospice and Palliative Care Organization which represents nearly 2,000 hospice companies.

“The emergency room physician should be aware that this is a hospice patient with lung cancer as opposed to an 85-year-old male who fell at a neighborhood park,” she said.

Patients and their families may be afraid to volunteer that information, said Dr. Al-Abousi.  “A lot of people get scared when they hear the “H” word,” she said.  “They think once they sign that paper for Medicare, nothing else is going to be covered.”