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Many Californians get new benefit — advance care planning

By EMILY BAZAR

F0r Kaiser Health News

 

Millions of Californians are newly eligible for a healthcare benefit that could determine the treatment they receive in their final days — and most don’t know it.

Medi-Cal, which covers more than 13 million Californians, and Medicare, with more than 5 million California enrollees, now pay for “advance care planning” discussions with doctors.

Advance care planning isn’t about long-term-care options, such as nursing homes or assisted living.

It’s about “your wishes for your care if you are not able to speak for yourself,” said Helen McNeal, executive director of the California State University Institute for Palliative Care.

“If you’re incapacitated, if you need someone to speak for you, who do you want to speak for you? And what would be your medical wishes?” she said.

If, for instance, you have a stroke that leaves you unconscious and unable to communicate, with little hope for improvement, would you want to be kept alive with a feeding tube and or ventilator?

“These decisions may have consequences for the quality of life you have for the rest of your life. They may also have consequences for whether you live or die,” McNeal said.

In other words, they’re important. But many doctors and patients don’t yet realize that talking about these decisions — and possibly putting them into writing — is a covered benefit.

Starting in October, Medi-Cal — the state’s version of the federal Medicaid program for low-income residents — began covering advance care planning discussions between doctors (or other qualified providers) and patients (or a family member), said Tony Cava, spokesman for the state Department of Health Care Services, which administers Medi-Cal.

Any Medi-Cal recipient can use the coverage regardless of age, he said. Doctors can bill for the conversation twice a year per patient — plus an additional 30 minutes for one of the conversations — before they have to seek authorization for more coverage.

Medicare, the federal health insurance program for people 65 and older, and for people younger than 65 who have certain disabilities, started covering the discussions on Jan. 1. Medicare does not limit the number of discussions per patient each year.

Some private insurance plans cover these discussions and some don’t, McNeal said. Check with your plan.

Both Medicare and Medi-Cal will cover the conversations even if patients don’t end up completing an “advance care directive” as a result. That’s a document that formalizes your wishes, which should be shared with your family and doctor.

McNeal believes that anyone over 18 should have this discussion and complete an advance directive.

But don’t expect your doctor to initiate the conversation.

“Many physicians may not be very comfortable having this conversation,” said Richard Thorp, M.D., president of the Paradise Medical Group near Chico, and past president of the California Medical Association, which represents the state’s doctors.

A poll of more than 700 doctors, released in April, found that nearly half of them feel unsure some or much of the time about what to say when discussing end-of-life care with patients. (The poll was commissioned in part by the California Health Care Foundation. California Healthline is an editorially independent publication of the California Health Care Foundation.)

Thorp’s patients are mostly older, so he incorporates advance care planning into their annual Medicare Wellness exams. Medicare reimburses him about $86 for the initial 30-minute discussion, and about $75 for each additional 30 minutes, he said.

“There’s an art to having the discussion,” he said. “There’s an art to recognizing when people are uncomfortable.”

McNeal’s institute, in partnership with the Coalition for Compassionate Care of California, offers online training for doctors about advance care planning. One course specifically focuses on how to have an effective conversation with patients.

Because many doctors don’t know about this benefit — or may feel uncomfortable broaching the topic — most people should start by having a conversation with family and loved ones, suggested Mark Beach, an AARP spokesman based in Sacramento.

After your discussion, write down your wishes, he said.

“It’s difficult to discuss, but when you’ve done it, it’s a comfort,” Beach said. “Not only will your wishes be followed, but your loved ones will know what to do.”

A variety of forms and templates are available to consumers. Thorp sometimes uses what’s called a “POLST” form, which is a medical order that must be completed and signed by a health care professional.

It is typically for seriously ill or frail patients, McNeal said, whereas an advance care directive is a legal document for people of any age or condition.

McNeal recommends the “Five Wishes” form, which can be personalized and is available online for $5 at www.AgingWithDignity.org. Other options for advance directives can be found at www.CaringInfo.org or through AARP. (A lawyer can help you prepare an advance directive, but you usually don’t need an attorney to get it done.)

After you have filled out your advance care directive, take it to your doctor and tell her you want to talk with her about it, McNeal said. Don’t forget to give your doctor a copy.

“The role of the physician is really to provide information, not to persuade one way or the other,” Beach said.

Thorp explains to his patients what it means to be intubated, fed artificially and kept on life-support.

Most are open to the discussion, he said, and their responses are mixed. Some older or sicker patients tell him they don’t want any extraordinary measures if they’re incapacitated. Others, who are younger and healthier, say they would probably want medical intervention if they might have a chance to thrive afterward.

“Most people don’t want to be kept on life-support indefinitely. They really don’t want that,” Thorp said. “They want to live a productive life.”

 


Here’s the latest in CMS’s hospital-rating saga

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By JORDAN RAU

For Kaiser Health News

Over the past decade, the federal government has publicized 115 different ways to measure medical quality in hospitals, from assessing wait times in emergency rooms and noise levels outside hospital rooms to tracking blood clots in surgical patients. But the latest effort, to combine dozens of metrics into one patient-friendly quality indicator, has proven the most contentious.

The Centers for Medicare & Medicaid Services recently postponed its plan to release the new rating system, which would award one star to the worst-quality facilities and five stars to those with the best marks. The delay came after a majority of members of Congress signed a letter supporting the hospital industry’s concerns.

Hospital leaders who previewed the preliminary rating system say that the formula seems skewed against institutions that treat the poorest or toughest patients, meaning those with complex illnesses. The number of stars would be based on 64 different measures, which are posted on Medicare’s Hospital Compare Web site. The metrics on mortality, readmission, patient experience and patient safety are the most influential, each representing 22 percent of a facility’s rating.

Steven Lipstein, president of BJC HealthCare, a St. Louis-based nonprofit that runs 14 hospitals, said the ones in his organization that earned five stars were smaller, located in affluent areas and handled less complicated cases. “They don’t have comprehensive cancer centers, they don’t have major cardiovascular disease, they don’t have neuro-specialties,” he said.

BJC’s more advanced hospitals did worse, he said. “That’s not surprising when you look inside the ratings and see how they’re built,” he added.

Consumer advocates defend the rating system, saying that while not perfect, it correctly reflects higher rates of problems in some big institutions despite their lofty reputations. They worry that delay and congressional resistance are undermining Medicare’s attempt to help consumers select a hospital based on something more substantive.

“The star ratings hopefully will get quality into that decision-making process,” said Andrew Scholnick, a lobbyist for AARP, the advocacy group for seniors.

Medicare officials initially said they hoped to release the ratings to the public in July. But in a presentation to hospitals and other interested parties on May  12, they did not set a firm date.

Medicare already has made minor tweaks in the formula to calculate the stars, but it remains a tough grader, the presentation shows. If Medicare releases the star ratings in July, nearly half of the 3,658 hospitals being evaluated would be getting three stars, according to Medicare’s preliminary calculations. Just 100 hospitals would receive five stars, while 135 would receive a single star.

Officials indicated they were standing firm in their intention to eventually release the scores. “The Overall Star Rating represents a performance summary designed to facilitate patient and consumer use of Hospital Compare,” the presentation said. Officials plan to update the scores every three months through the end of this year and then twice thereafter.

The broader debate about the government judging hospitals has been going on since Medicare began publishing quality ratings in 2005. But it has intensified since passage of the Affordable Care Act, which instructed Medicare to use quality metrics in setting payments.

Teaching hospitals as a group have tended to fare poorly from some of these financial incentives. This year, for instance, nearly half of major teaching hospitals are losing 1 percent of their Medicare payments because of high rates of infections and surgical complications. Facilities with more low-income patients, who often face difficulties affording medication, following complicated recovery instructions and getting to doctors regularly, typically have higher readmission rates.

Some health care researchers are also skeptical. “If you come out with a rating that says Cleveland Clinic is terrible but podunk hospital in North Carolina, they’re the bomb, there’s a disconnect,” said Ashish K. Jha, a professor at Harvard’s public health school. “If it completely contradicts everything you’ve known, you need to ask yourself, ‘Did I not understand the way hospital care works, or is there a problem with the metric?’”

Medicare’s move toward using star ratings is part of a greater focus on easy-to-grasp composite judgments of hospital quality. The Leapfrog Group, a nonprofit patient-safety group, uses report-card letter grades to characterize hospital safety based on many of the same individual measures as Medicare. Healthgrades, a Denver-based company, judges hospital quality with one, three or five stars. Consumer Reports calculates a safety score on a 100-point scale.

Medicare hopes that a star rating from the government will carry even more credibility.

“People need this information now,” Scholnick said. “Trying to wait until everyone’s 100 percent happy with everything just delays it further than it needs to be.”


Family caregivers get more legal respect

 

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The Woman as Family Doctor, by Dr. Anna Fischer-Dückelmann

By ANNA GORMAN

For Kaiser Health News

GLENDALE, Calif.

Diana Matsushima cares for both her husband and sister-in-law full time, giving them their medications and driving them to their doctor appointments.

But when either ends up hospitalized, Matsushima said her role as their primary caregiver is often overlooked. She isn’t always included in the discussions at the hospital, and she sometimes leaves confused about how to best care for them when she gets home. When they are discharged, she said the nurses hand her a stack of papers without much — if any — explanation.

“They print out these cryptic notes,” Matsushima said. “My background is health education and I don’t know what these things mean to me and my family.”

Beginning this month, family caregivers like Matsushima could have a much different experience. A new California law, SB 675, requires hospital staffers to involve a family caregiver during the hospitalization and discharge process, which supporters say will improve patients’ overall health and reduce their chances of readmission.

The law, sponsored by state Sen. Carol Liu,  mandates that hospitals give patients an opportunity to identify a caregiver, notify that caregiver when the patient is to be discharged, and provide information and instruction on the patient’s needs and medications following the hospitalization. Hospitals must still follow privacy laws and aren’t required to release information if the patient doesn’t give consent.

California is among 18 states to pass such laws over the past two years, including Arkansas, New Hampshire, Oregon and Virginia. It’s part of a growing awareness among policymakers and legislators that family caregivers play an important role during and after a relative’s hospitalization.

How hospitals communicate with caregivers is expected to become more important as the population ages and the number of unpaid family caregivers continues to increase. An estimated 40 million Americans have cared for a relative in the past year, according to a 2015 study by the National Alliance for Caregiving and AARP.

The changes are largely being driven by AARP, which is leading a campaign to reduce barriers for family caregivers. The impetus comes from the organization’s 2012 survey, which found that 46 percent of caregivers perform medical tasks, such as giving injections, most without any training or guidance from medical professionals. AARP crafted model legislation known as the Caregiver Advise, Record, Enable, or CARE Act, and is promoting it around the nation.

Elaine Ryan, AARP’s vice president for state advocacy and strategy, said the legislation is designed to improve caregivers’ competency and give them peace of mind.

“A piece of paper can’t really educate people how to fill a syringe or clean a PICC line,” Ryan said, referring to a catheter inserted into a vein in a patient’s arm. The laws “make sure that family caregivers have all the information they need to safely care for their loved one at home.”

Matsushima said she has struggled to get that sort of information since 2009, when her husband had a stroke and she became a caregiver. During one hospital visit, she had to demand that nurses instruct her how to remove her husband’s catheter.

Over the past year, she has also helped her sister-in-law through two surgeries and two lengthy hospital stays. The first time her sister-in-law was discharged, Matsushima said she got very little notice or guidance. Two days later, her sister-in-law fell while getting out of bed and ended up back in the hospital.

Matsushima said she feels “fed up with hospitals” and hopes the new law will make things better for her and other caregivers.

Around the country, however, some hospital associations say their members already include caregivers in the discharge planning process and that adding specific requirements only adds more work. At the same time, hospitals face increased pressure from the Centers for Medicare & Medicaid Services to keep patients from being readmitted, and some recognize that improving communication with family caregivers can’t hurt.

In New Jersey, where a similar law passed last year, the state’s hospital association had some reservations but made a political decision to work with AARP to tailor their model legislation to the state, said Neil Eicher, vice president of government relations for the association. That meant making changes, including stripping out time requirements for notifying caregivers of discharge.

“We understand the importance of having good discharge planning,” he said. “We just didn’t want our hands tied to those time frames.”

Oklahoma also passed caregiver law last year, and Sandra Harrison of the state’s hospital association said some members find it challenging to implement.

“You’ve now got a requirement to educate the caregiver,” she said. “But not everybody has a caregiver … And not all caregivers want to learn or carry out the instructions.”

Currently, hospital staff members often make incorrect assumptions about who the caregivers are or how much they know, said Donna Benton, associate research professor of gerontology at University of Southern California. They send people home without knowing whether food is in the house or someone to get patients’ medication or bring them to a follow-up appointment.

“This is a very important bill,” said Benton, co-director of the Los Angeles Caregiver Resource Center. “This really puts the pressure on the hospital to actually identify the caregiver and try to meet with them according to their schedule.”

Pamela Bingham, an engineer who lives in Virginia, said she quickly felt overwhelmed by everything she had to learn to care for her parents. Her father, who died earlier this year, had kidney disease, diabetes and high blood pressure. She still takes care of her mother, who is blind and has dementia and diabetes.

“It was like I was a nurse,” she said. “And it takes nurses years to learn this stuff.”

Bingham said she was relieved to see a law pass in Virginia earlier this year so caregivers can get more guidance. She said doctors and nurses are focused on treating patients while they are at the hospital — not on what happens after they and their caregivers leave.

“Bills like this are important,” she said. “They force the hospitals to really focus on the discharge process.”

 


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