As a consultant who counsels families on end-of-life care management, Johanna Turner often shares the story of her mother’s final days 21 years ago. Thanks to the skilled and loving care provided by a local hospice, Turner was able to keep her promise to let her mother die in their Oakton, Va., home.

“She had the best of care for five months,” says Turner, a District resident. “A hospice licensed practical nurse came first thing in the morning to help change complex dressings, a primary nurse visited several times a week, there was an on-call nurse to help address pain-control questions in the middle of the night, plus a social worker and a chaplain. It took all of us to get through those weeks.”

Still, Turner tells families, she had to bear much of the caregiving, even taking a leave of absence from her job. “I treasured that time, but it was physically and emotionally exhausting. Hospice made it doable, but the truth is, it was still a lot of hard work.”

Some families, she says, may not be able to bear that burden, certainly not without hiring extra help. But, she says, “the hospice gave me the skills and confidence to do what I wanted so badly to do for my mother. I will always be grateful.”

Introduced to the United States in the 1970s, hospice care is becoming an increasingly common treatment. Last year, 1.65 million people received hospice care, up from just more than 1 million in 2004, according to the National Hospice and Palliative Care Organization. In addition, there were more than 5,500 programs in the U.S. last year, compared to 3,100 in 2000.

Although the growth in hospice programs has given patients and their families more choices than ever, a recent Washington Post investigation into the industry found widespread concerns about the quality of care. The Post cited numerous complaints, noting that although hospices are supposed to provide continuous nursing care to patients whose pain or symptoms are out of control — commonly called “crisis care” — one in seven do not.

Unfortunately, there is no federal rating system — as there is for hospitals and nursing homes — that can help consumers make educated choices about the hospice they select.

For many families, hospice is an unfamiliar concept that prompts fear and questions, including where, why and even when someone should receive hospice care. To help patients and their caregivers, here are some hospice basics:

What Is Hospice Care?

Hospice is not a particular place, like a hospital, but a service that provides end-of-life care and support to the dying and their families, most often in a patient’s home. By signing up for hospice, patients generally agree to stop all disease-fighting treatments, such as chemotherapy and radiation, although some hospices allow such therapy if it is to help manage symptoms, such as pain or problems breathing.

One of the hospice’s primary goals is to alleviate pain. Through a team of caregivers — doctors, nurses, social workers, grief counselors, spiritual counselors, home health aides and volunteers — the hospice provides comprehensive care, including drugs, medical supplies and equipment. It instructs families on patient care and even provides special services such as physical therapy and psychological counseling.

“If we can manage and alleviate pain, we can help reinvigorate patients to help them accomplish whatever it is they want to do in their remaining days, whether it’s making peace with an estranged sibling, attending the wedding of their grandchild — or just going out to eat or fish,” says Malene Davis, president of Capital Caring, one of the first hospices in the Washington area. It now cares for about 1,200 patients a day.

How Much Care Does Hospice Provide?

Comprehensive care generally does not mean around-the-clock service, although many hospices provide 24/7 care when the patient is in crisis or near death.

“The hospice will teach families how to care for a patient, address their concerns and answer questions, but it does not take over the caregiving,” says Dale Lupu, an associate professor at George Washington University’s Center for Aging, Health & Humanities. “Someone on the hospice staff should be available by phone 24/7 in case there’s a crisis. But for hour-by-hour, day-to-day care, the family has to figure out a way to be involved,” even if it means hiring a private nurse or home health aide.

That’s one reason why hospice care may not be for everyone. “Families have to look within themselves and ask if they are comfortable being part of the dying process,” says Linda Kunkel, director of marketing and business development for Care Options, a Northern Virginia care-management firm. “It can be very gut-wrenching and, for some people, very hard.”

Who Pays For Hospice Care?

Medicare covers most hospices for its beneficiaries. Private insurance plans and HMOs also generally pay for hospice care, but they may have a preferred provider. Check with your insurer before you begin your hospice search.

In some cases, a small co-pay — such as $5 or 5 percent — may be required for medication, inpatient facility care and/or respite care.

Additionally, most hospices offer financial help for families in need. So make sure to discuss any financial concerns in your initial meetings.

If Hospice Is Not A Place, Where Do I Get Hospice Care?

Nearly two-thirds of hospice patients die at their homes, a nursing home or an assisted-living facility.

For patients who can’t be cared for at home — perhaps they live alone or have complications that can be treated only at a health-care facility — some hospices have inpatient facilities in freestanding centers or specially designated sections in hospitals or nursing homes.

Why Would I Want Hospice Care? Can’t My Doctors And Local Hospital Adequately Meet My Needs?

Surprisingly no, hospice experts say.

“The traditional medical approach is cure, cure, cure; but when a person is dying, he or she may need a different approach,” says Linda Adler, head of Pathfinders Medical, a California health-care advocacy firm that helps patients with complicated medical diagnoses. “The patient needs someone who’s willing to move the conversation from finding a cure to having best quality of life in the midst of an illness, someone who’s not afraid to talk about the end of life and provide compassion in the final days. Most physicians aren’t trained to do that.”

Hospice caregivers also have in-depth training and experience in palliative treatments for pain management. “Most doctors are not adequately trained in pain management, and the quality of pain control in hospitals and nursing homes is very uneven,” says Naomi Naierman, who was the president of the American Hospice Foundation before it closed last year.

When Should I Start To Think About Hospice?

Most hospices require an order from the patient’s physician as well as approval from the hospice medical director. Both must certify that the patient has six months or less to live if the illness runs its normal course. However, if a patient outlives that time, he or she can be “recertified” to continue receiving hospice care.

But experts in end-of-life care say most Americans need to start thinking about hospice long before the final six months is near. As the American Cancer Society notes on its website: “One of the problems with hospice is that it’s often not started soon enough. Sometimes, the doctor, patient, or family member will resist hospice because he or she thinks it means you’re ‘giving up,’ or that there’s no hope. This is not true. If you get better or the cancer goes into remission, you can leave hospice and go into active cancer treatment.”

Indeed, hospice experts say many people leave hospice, a situation that the late humorist Art Buchwald made famous when recounting his own discharge from a hospice. Patients can then be readmitted to hospice when their conditions deteriorate again.

J. Donald Schumacher, president of the National Hospice and Palliative Care Organization, says patients should discuss hospice options as early as they are diagnosed with a potentially fatal disease. “Don’t wait for the doctor to begin the conversation. Even if you agree to aggressive therapy, ask what are the plans if you don’t return to your optimum health.”

Are All Hospices The Same?

No; they vary greatly.

An increasing number of hospice organizations are for-profit, a distinct change from the early days of the hospice movement when they were mostly nonprofit. Today, 65 percent of hospice organizations are operated as for-profit companies, up from 34 percent in 2000.

Being a for-profit company is not inherently bad, but many of the complaints about substandard service have been leveled at for-profit hospice firms, The Post investigation found. The Post reported that the typical for-profit spent less on nursing and was less likely to have sent a nurse in a patient’s last days of life.

Still, Adler of Pathfinders Medical says consumers shouldn’t necessarily refuse to use a for-profit concern. “There are bad hospices, just like there are bad doctors” in both for-profit and nonprofit organizations, she says. “There are also great hospices in both kinds of groups. That’s why people need to do their homework.”

How Do I Find A Good Hospice?

First, seek recommendations from health-care providers and specialists such as geriatric-care managers. Ask which hospice they would use for themselves or a loved one.

Next, call the recommended hospices and ask questions about the issues that matter most to you, such as:

— How often do their caregivers come to visit? (A nurse’s aide should visit about three times a week and a nurse or doctor once a week, Naierman says.)

— Are their doctors and nurses certified in palliative care?

— Is there crisis care? How fast can a caregiver get to your home in case of a crisis? Will they come at any time, even 3 a.m. Saturday?

— Will the patient’s primary doctor still be involved in the medical care?

— Will a nurse or clinician be in the home when the patient is actively dying? (“The answer should be yes,” Naierman says. “If it is anything but yes, run, don’t walk, away.”)

— Is there an inpatient facility if the patient needs extra care? Is it conveniently located?

— Are there limits on radiation and chemotherapy, even if it’s to control pain? What about IVs, dialysis or blood transfusions?

— How does the hospice handle new health problems that are curable, such as urinary tract infections or pneumonia?

— What is expected from family members? What will they be required to do? Give medicine, including shots? Bathe the patient?

— Is respite care – providing relief and time off for caregivers – offered?

“Having a conversation with the hospice admission people helps you get a feel in advance on how receptive they will be to your needs,” says Naierman, who helped develop 16 key questions to ask a hospice.

Are There Any Other Criteria To Judge The Quality Of A Hospice?

Yes. Here are some details to look for:

— Accreditation status. Three organizations — the Joint Commission, the Accreditation Commission for Health Care and the Community Health Accreditation Program — inspect and approve hospice programs.

“I would always lean toward an accredited program when available because it speaks to a program’s willingness to open itself to review and, hopefully, improvement,” says Lupu, who notes that only 40 percent of hospices are accredited.

— Age and patient load. “Experience — gained over time and gained over a number of cases — usually helps build both individual clinician expertise and organizational/team expertise,” Lupu wrote in a recent post on Pallimed, a blog about hospice and palliative medicine. “Very new and very small hospices are unlikely to have the breadth of experience and the depth of resources to assist with challenging or unusual circumstances.” She suggested that patients should generally lean toward an organization with at least five to 10 years of experience that handles at least 80 patients a day.

— “Live discharge rates,” which is the proportion of people who leave hospice care before dying. A large number of departures may signal that patients were unhappy with care and services. “I’d select a hospice with a live discharge rates in the 10 to 20 percent range,” Lupu says.

Where Can I Go For Additional Help?

There is a lot of information on hospices on the Internet, including:

— The National Hospice and Palliative Care Organization’s Moments of Life website and its Caring Connections page.

— The American Hospice Foundation’s educational website.

— The American Cancer Society’s fact sheets on hospice care.

— The Washington Post’s online consumer guide.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Transcript for HHS Telebriefing: Update on Ebola clinical trial research

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The Obama administration Monday announced a goal of accelerating changes to Medicare so that within four years, half of the program’s traditional spending will go to doctors, hospitals and other providers that coordinate their patient care, stressing quality and frugality.

The announcement by Health and Human Services Secretary Sylvia Burwell is intended to spur efforts to supplant Medicare’s traditional fee-for-service medicine, in which doctors, hospitals and other medical providers are paid for each case or service without regard to how the patient fares. Since the passage of the federal health law in 2010, the administration has been designing new programs and underwriting experiments to come up with alternate payment models.

Last year, 20 percent of traditional Medicare spending, about $72 billion, went to models such as accountable care organizations, or ACOs, where doctors and others band together to care for patients with the promise of getting a piece of any savings they bring to Medicare, administration officials said. There are now 424 ACOs, and 105 hospitals and other health care groups that accept bundled payments, where Medicare gives them a fixed sum for each patient, which is supposed to cover not only their initial treatment for a specific ailment but also all the follow-up care. Other Medicare-funded pilot projects give doctors extra money to coordinate patient care among specialists and seek to get Medicare to work more in harmony with Medicaid, the state-federal health insurer for low-income people.

Burwell’s targets are for 30 percent, or about $113 billion, of Medicare’s traditional spending to go to these kind of endeavors by the end of President Barack Obama’s term in 2016, and 50 percent — about $215 billion — to be spent by the end of 2018.

The administration also wants Medicare spending with any quality component, such as bonuses and penalties on top of traditional fee-for-service payments, to increase, so that by the end of 2018, 90 percent of Medicare spending has some sort of link to quality. These figures do not include the money that now goes to private insurers in the Medicare Advantage program, which enrolls about a third of all Medicare beneficiaries.

Monday’s announcement did not include any new policies or funding to encourage providers, but Burwell said setting a concrete goal alone would prompt changes not only in Medicare but also by private insurers, which are also trying some of these alternative models. Leavitt Partners, a consulting firm, counts 317 commercial ACOs and 40 in the Medicaid program.

“For the first time we’re actually going to set clear goals and establish a clear timeline for moving from volume to value in the Medicare system,” Burwell said at an announcement at the department’s headquarters, where she was joined by leaders from insurance, hospitals and doctors groups. “So today what we want to do is measure our progress and we want to hold ourselves in the federal government accountable.”

Some providers have eagerly embraced the new payment models, some with success. Roughly a quarter of ACOs saved Medicare enough money to win bonuses last year. Others are wary, particularly since they could lose money if they fall short on either saving Medicare money or achieving the dozens of quality benchmarks the government has established.

“ACOs are quite expensive to set up,” said Andrea Ducas, a program officer at the Robert Wood Johnson Foundation, a New Jersey philanthropy that is funding research into ACO performance. “There’s a significant upfront investment and if you’re not sure you’re going to make it back, there’s a pause.”

In the largest ACO experiment, the Medicare Shared Savings Program, 53 ACOs saved enough money in 2013 to get bonuses from the government, but 41 spent more than the government estimated they should have. Those ACOs did not have to repay any money, but in future years Medicare intends to require reimbursements from those who fall short. Providers have been pushing Medicare to increase the cut they get from these programs and lessen the financial risks in ACOs and the other programs.

“Government needs to do more to make sure there’s more shared savings going back to the providers,” said Blair Childs, an executive with Premier, a company that assists hospitals and providers in establishing ACOs and other models.

It is still too early to know whether these alternate payment models actually improve the health of patients and whether the savings that have been achieved so far — often by focusing on the most expensive patients — will plateau. Studies on the success of these programs have shown mixed results.

“We still have very little evidence about which payment methods are going to be successful in getting the results we want, which are better quality care and more affordable care,” said Suzanne Delbanco, executive director of Catalyst For Payment Reform, a California-based nonprofit that has been tracking the spread of alternative payment models in the private sector.  “We’re just wanting to avoid a situation where a few years from now, where we’ve completely gotten rid of fee-for-service, we don’t want to wake up and say, ‘Oh my gosh, we did it and we’re no better off.’”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

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Hospitals need to focus more on reducing preventable errors and infections and the government must create more economic incentives to improve patient safety, Vice President Joe Biden said at a conference in Irvine, Calif. over the weekend.

“Up until now, our health care system – in my humble opinion – hasn’t sufficiently linked quality … with safety,” he said. “Not enough time has been focused on keeping bad things from happening.”

But Biden said the paradigm is starting to change. Hospitals are now penalized for unnecessary readmissions and new technology alerts nurses of possible problems and reduces the reliance on handwritten doctors’ orders.

Gains have been made in improving hand hygiene and reducing central line infections, he said. And a recent government report by the Agency for Healthcare Research and Quality found that 1.3 million fewer hospital-acquired conditions occurred – and 50,000 fewer deaths – in 2013 compared to 2010.

“This is the time to double down on your commitment to patient safety,” he told the crowd of doctors, nurses, hospital executives and patient advocates. “We’ve gone from accepting the inevitable to showing what’s absolutely within our wheelhouse to be able to change.”

The conference was sponsored by the Patient Safety Movement, an organization aimed at reaching “zero preventable patient deaths by 2020.” There were panels on patient involvement, on lessons learned from Ebola and on measuring hospital efforts to improve safety.

Alicia Cole, who attended and spoke at the conference, has spent years recovering from multiple hospital-acquired infections. She went into a Burbank hospital in 2006 for a simple surgery to remove small fibroids and ended up with a staph infection, sepsis and flesh-eating disease.

“Instead of getting better I deteriorated,” Cole said. She has had numerous additional surgeries, had to stop working and still sees a doctor weekly. “My life completely changed.”

Jim Bialick, president of the Patient Safety Movement Foundation, said it’s critical to bring together patients, doctors and technology companies to create solutions. “Traditional methods aren’t working,” he said.

Bialick said he appreciates the government’s renewed focus on the issue. For instance, its Partnership for Patients program is working with 3,700 hospitals across the nation to reduce preventable infections and readmissions.

Much of the discussion at the conference focused on sepsis, a blood infection that costs the health care system more than $20 billion annually and has a mortality rate of up to 50 percent. Several hospitals, including UC San Francisco, have programs aimed at identifying victims early.

Chris Fee, associate professor of emergency medicine at UCSF, said reducing sepsis deaths is about recognizing symptoms in patients and getting treatment started as soon as possible. Technology can be key in alerting hospital staff of abnormal vital signs and lab tests he said.

“We have to remember that patients can be very ill and look quite well,” Fee said.

The UCSF project started as a pilot and has since expanded to the entire hospital. Fee said it is credited with reducing mortality from 18 percent in 2012 to 12 percent in 2014 and saving more than 100 lives.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

At the Cleveland Clinic’s sprawling main campus, patient Morgan Clay is being discharged.

Clay arrived a couple of weeks ago suffering from complications related to acute heart failure. He’s ready to go home. But before Clay can leave, pharmacist Katie Greenlee stops by the room.

“What questions can I answer for you about the medicines?” Greenlee asks as she presents a folder of information about more than a dozen prescriptions Clay takes.

“I don’t have too many questions,” Clay says. “I’ve been on most of that stuff for a long time.”

Clay is 62 years old and has been on many of the medications since he was in his 20s, when he developed heart problems.

Still, Greenlee wants to make sure Clay understands the importance of taking his pills at the right time and at their full dosage. Not taking medicine correctly is a big reason patients return to the hospital. And research has found that as many as 30 percent of prescriptions are never filled.

Since the Cleveland Clinic began sending pharmacists into cardiovascular patient rooms at discharge, it has drastically reduced its number of readmissions. And that means it has reduced its Medicare fines, mandated by the Affordable Care Act.

But this kind of success in the ACA’s readmissions program, now in its third year, has been hard to achieve for other Cleveland hospitals that serve more poor patients.

This month, the National Quality Forum began a two-year trial period that adjusts Medicare’s metrics to account for poorer patient populations. NQF is a not-for-profit advisory group that works with federal regulators on the penalty metrics.

NQF’s Chief Scientific Officer Dr. Helen Burstin says one main question is being asked: “How much should these issues around socioeconomic status (and) poverty be considered as well for the readmission program?”

During the trial period, researchers will gather data on which penalty measurements are related to poverty and how they could be risk adjusted, Burstin says.

“Socioeconomic status may be a proxy for some other really important factors, such as whether somebody has social support at home, whether somebody has the ability to come back and have a follow-up appointment with their doctor after hospitalization,” she says.

The key, Burstin says, is to understand which factors hospitals could be accountable for improving.

“So we would also like to begin to understand what’s underlying those differences,” Burstin says. “And, ultimately begin to understand which of those lend themselves towards improvement strategies, like making sure somebody does in fact have what they need to make sure they don’t bounce back into the hospital.”

Burstin says federal regulators at the Centers for Medicare and Medicaid Services are part of the discussions and “willing to participate in the trial going forward.”

Cleveland may be the perfect place to help answer this question.

On the near West Side of Cleveland, Dr. Alfred Connors is chief quality officer at county-owned MetroHealth System. About half of the hospital’s patients are uninsured or on Medicaid, which is government coverage for the poor and disabled.

“So we take care of people who are homeless, people who don’t have places to go when they leave, people who really don’t have family supports. They are living by themselves on a very limited income,” Connors says.

Unlike the Cleveland Clinic, MetroHealth has seen its Medicare fines increase since the program began in 2012. MetroHealth had a .83 percent cut in Medicare reimbursement for 2015, as compared with a .45 percent in 2013.

The Clinic’s main hospital is more likely to have privately insured patients, like Clay. Since 2013, the Clinic’s main campus has seen its penalty drop to .38 percent of Medicare payments from .74 percent.

There are several factors at play in the numbers. First, the maximum penalties increased to a 3 percent cut in Medicare funding in the fall of 2014. The penalty has ratcheted up from 1 percent when the program began.

In addition, federal regulators began tracking two new conditions. The penalties were originally based on readmissions of Medicare patients who went into the hospital with one of three conditions – heart attack, heart failure and pneumonia – and returned within 30 days. Now, federal regulators are also including readmissions for hip/knee replacement surgery and chronic obstructive pulmonary disease, or COPD.

Still, the Cleveland Clinic’s Chief Quality Officer Dr. Michael Henderson says socioeconomic issues like poverty are an important factor.

“One of the real benefits of some of these programs that have come in place is it’s really put coordination of care on the map for patients,” Henderson says.

Leaders at Cleveland-area hospitals say that regardless of the amount of care and coaching a patient gets in the hospital, a patient’s home environment is critical.

University Hospitals – the city’s other big hospital system – also serves a high proportion of low-income patients at its main campuses. It reported a .59 percent penalty in Medicare reimbursements for 2015 up from a .11 percent hit in 2013.

Dr. William Annable, chief quality officer at University Hospitals, is skeptical about the program and its penalties: “There are some people in the health care industry who see it as the government trying to solve society’s problems on the back of the hospitals.”

This story is part of a partnership that includes WCPN/Ideastream, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Better, Smarter, Healthier: In historic announcement, HHS sets clear goals and timeline for shifting Medicare reimbursements from volume to value

Square peg, round hole. More than a third of silver plans offered on the federal health insurance marketplace may be listing inaccurate or incomplete prescription drug cost-sharing information because their formularies don’t fit neatly into the federal government’s online template, a recent analysis found.

Healthcare.gov is the online gateway for consumers in 37 states to compare the health plans available to them on the individual market.

The website’s prescription drug formulary information is divided into four tiers: generics, preferred brands, non-preferred brands and specialty drugs. The analysis by Avalere Health, a research and consulting organization, found that 35 percent of silver-level plans offered this year on the federally facilitated exchange don’t follow this model.

Many plans have five or six drug tiers, says Dan Mendelson, CEO at Avalere. Seventeen percent, for example, use multiple specialty drug tiers, and many plans split generic drugs into two categories rather than one, he says.

“The plans are doing the best they can with the fields they have to convey the information,” he says.

Why does it matter? In their efforts to force fit their plans into the federal government’s information grid, consumers aren’t necessarily getting the complete information they need to accurately predict their out-of-pocket costs. This can be especially problematic for plans with multiple specialty tiers, where cost sharing may increase significantly for drugs in the highest tiers.

Administration officials had no response Thursday.

If consumers click through from the healthcare.gov website to the benefits and coverage summary that every insurer has to provide for each plan, drug coverage details will generally be more clearly spelled out.

It’s an evolution, says Mendelson. “The system this year is worlds better than the system last year, and next year it needs to be better than this year.”

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.