Read Caregiving Policy Digest on a webpage.

“As I learned, treating someone with cancer takes a team of supporters. But everything I’ve written here could easily apply to those with a host of other illnesses and chronic conditions. Policies that address this issue are rare. What seems more important is recognizing that the efforts of caregivers are probably just as important to health as the drugs and procedures the medical system provides. Rides to the hospital are care. The time spent at home with those recuperating after procedures is care. Watching and monitoring and caring for the ill in their home is just as much care as doing the same in a hospital. We are willing to pay a fortune for the former, and almost nothing for the latter.” — Aaron E. Carroll, professor of pediatrics, Indiana University School of Medicine, writing in The New York Times, March 25, 2019

In This Issue: Waiting on the judge :: preserving the MFP program :: expanding home kidney disease care :: dwindling rural long-term care :: LTC residents’ quality of care and safety (yet again) :: HAC penalties hit 800 hospitals :: paid family leave gathers steam :: tax credits for caregivers :: HCBS settings guidance :: AD claims another victory :: alternative AD prevention possibilities :: the CARE Act: initial reviews :: HCBS in the spotlight :: UHF and Penn shed light on post-hospital options :: VERA rehabs ortho patients :: meeting the need for assistive devices :: countering seniors’ loneliness :: getting it right with antibiotics and opioids :: distinguishing palliative and hospice care :: achieving a “good end of life” :: fighting the patients-as-consumers paradigm

BREAKING: As Caregiving Policy Digest was about to launch word came that the U.S. District Court in Washington has ruled that CMS’ Medicaid work requirement approvals for Kentucky and Arkansas are invalid. In the next issue we will provide fuller coverage of this development, as well as of President Trump’s late March decision to ask a U.S. Circuit Court to find the entire ACA unconstitutional.

As March drew to a close, deadlines loomed regarding Medicaid work requirements and Medicaid spousal impoverishment protections.  

Awaiting Ruling in Challenge to Kentucky’s Work Requirement

The first deadline was a self-imposed one by U.S. District Court Judge James Boasberg when he promised to rule by the end of the month on a renewed challenge to Kentucky’s HHS-approved work requirement for Medicaid coverage, as well as on a related case involving Arkansas’ similar and already implemented requirement. The court’s ruling will come against a backdrop of ongoing efforts by the Trump Administration to encourage more states to seek permission to impose work rules and other changes in their delivery of Medicaid services. As Modern Healthcare’s Robert King reported , CMS has provided states with new tools to help them get approval for such changes. “The new tools include templates to implement and monitor changes and guidance on how to evaluate a Medicaid waiver demonstration. Each tool is intended to help a state comply with federal requirements to submit quarterly and annual monitoring data to the CMS. For example, the tools can help the state determine how to test whether work will lead to increased or sustained employment for impacted beneficiaries. Work rules require certain beneficiaries to work a certain number of hours a month, volunteer, or attend school or job training in order to remain on Medicaid. ‘We support states having the ability to pursue different approaches to meet similar goals or administer common policies,’ CMS administrator Seema Verma wrote in her blog. ‘Arkansas is implementing community engagement differently than New Hampshire, which has a different approach than Indiana.’”

EMPOWER Care Act in Congress: Extend Successful Money Follows the Person Program

The future of an important source of support for impaired individuals is uncertain. As AARP’s Jean Accius and Molly Evans note , “the Money Follows the Person Rebalancing Demonstration (MFP) is a major federal demonstration program created to expand the range of LTSS options so individuals have greater choice in the services they receive, how and where the services are delivered, and who provides them. MFP provides states with flexibility and enhanced funding to transition Medicaid beneficiaries from nursing facilities and support them in the community. Currently, 43 states and the District of Columbia participate in the MFP program. As of 2018, more than 88,000 Medicaid beneficiaries transitioned to the community as a result of MFP. Despite the Money Follows the Person program’s success, however, its future is unclear. The program, in fact, expired at the end of fiscal year 2016, and while states can continue to claim funding through fiscal year 2021, some states have exhausted their funding allotment. Earlier this year Congress did provide some short-term funding, but those dollars are likely to run out before September. A current bill in Congress, called the EMPOWER Care Act, would strengthen MFP and extend the program through 2023.”

Dialysis at Home

Appearing before a National Kidney Foundation audience, HHS Secretary Alex Azar shared his vision of a dramatic evolution of Medicare-covered, end-stage renal disease treatment from dialysis centers to patients’ homes. One hundred thousand Americans, Azar observed, “begin dialysis each year, and one in four of them are likely to die within that same year. Meanwhile kidney transplants are hard to come by; more than 100,000 Americans are currently on a waiting list for a transplant. Another way to understand the huge burden of this disease is to look at the financial costs. In 2016 Medicare spent $79 billion to cover people with kidney disease, and $34 billion on patients with ESRD, adding up to $113 billion in total spending. That represents more than one in five dollars we spend on Medicare. Today, 88% of Americans with ESRD start treatment with center-based dialysis. Just 12% start treatment at home with hemodialysis or peritoneal dialysis. This is the complete opposite of the situation in some of our peer nations, including Hong Kong, where more than 80% of patients benefit from some form of in-home dialysis. Heck, Guatemala is at 56% peritoneal! Improving the situation dramatically, as we ought to do, will mean examining the payment incentives in our programs today while expanding access to new technologies. There may be no better example of how outdated payment systems distort Americans’ healthcare and lower its quality than what we have in kidney care today. As many of you know, while peritoneal dialysis or home hemo may not be possible for absolutely everyone, they can often be more convenient, better for patients’ independence and self-sufficiency, and better for their physical health. We believe we may simply underpay for these alternatives, even though we know how much they can benefit patients’ lives. It is also more appealing for a dialysis company to add patients to a center where one machine can accommodate multiple patients than it is to provide new services to each patient at home. But that isn’t providing the care patients deserve, and we have the power within HHS to test out significant payment changes to boost home dialysis.”

Nursing Home Woes

Rural Nursing Home Closures

The availability of nursing home beds and the safety SNFs provide their residents both garnered considerable attention in March. For rural America the availability situation is posing an increasing strain on families in need of long-term care. “Harold Labrenz,” reports the New York Times Jack Healy, “spent much of his 89-year life farming and ranching in the rolling Dakota plains along the Missouri River. His family figured he would die there, too. But late last year, the nursing home in Mowbridge, South Dakota, that cared for Mr. Labrenz announced it was shutting down after a rocky history of corporate buyouts, unpaid bills and financial ruin. It had become one of the many rural nursing homes across the country that have gone out of business in recent years as beds go empty, money troubles mount and more Americans seek to age in their own homes. For Mr. Labrenz, though, the closure amounted to an eviction order from his hometown. His wife, Ramona, said she could not find any nursing home nearby to take him, and she could not help him if he took a fall at home. So, one morning in late January as a snowstorm whited out the prairie, Mr. Labrenz was loaded into the back of a small bus and sent off on a 220-mile road trip to a nursing home in North Dakota. More than 440 nursing homes have closed or merged over the last decade,” Healy writes, “according to the Cowles Research Group, which tracks long-term care. Each closure scattered patients like seeds in the wind. Instead of finding new care in their homes and communities, many end up at different nursing homes far from their families.”

Recent Senate Hearing on Abuse in Nursing Homes

While long-term care availability increasingly challenges rural America, persistent deficiencies in the safety and quality of the care provided to all nursing home residents aroused the ire of Senators at a Senate Finance Committee hearing in early March. Exploitation, reported AARP’s Sarah Elizabeth Adler, “was detailed in statements from regulators, relatives of victims and other experts, and included reports of medication mismanagement, neglect resulting in bedsores and other preventable infections, starvation, dehydration, sexual abuse and even death. Committee Chairman Chuck Grassley, who sponsored the 2017 Elder Abuse Prevention and Prosecution Act aimed at strengthening the federal government’s ability to curb elder abuse in a variety of settings, noted that the mistreatment of older adults in nursing homes remains a ‘systemic’ problem. ‘Hardly a week goes by,’ he noted, ‘without seeing something about nursing home abuse or neglect in the national news.’” From Harvard Medical School Department of Healthcare Policy Prof. David C. Grabowski, came testimony focusing on the state of quality in nursing homes and why quality remains such a persistent problem. Grabowski pointed to such factors as low and fragmented payment, inconsistent oversight of quality regulations, innovation-impeding certificate of need regulation, and a lack of quality transparency. “We have made important progress towards improving nursing home quality over the past few decades. I would assert however that the nursing home sector is better, but still not well. Significant quality of care problems persist in many U.S. nursing homes. However, these problems are not isolated in particular facilities or patients. These problems are related to system-level issues and how we pay for care, how we regulate providers, and the inability of residents and their advocates to monitor and oversee care. Unless we address these border issues, we will be discussing poor nursing home quality for another 50 years.” In a written statement submitted to the committee by six major long-term care advocacy groups, a number of specific remedies were emphasized, including: 

Nursing Home Fines Lowered Under Trump Administration

Underscoring the advocacy groups’ civil monetary penalty concern, Kaiser Health News’ Jordan Rau reported that “the Trump Administration’s decision to alter the way it punishes nursing homes has resulted in lower fines against many facilities found to have endangered or injured residents. The administration switched from fining nursing homes for each day they were out of compliance—as the Obama administration typically did—to issuing a single fine for two thirds of infractions. At the same time the average fine dropped to $28,405, down from $41,260 in 2016. ‘That’s not changing behavior in the way that we want,’ said Dr. Ashish Jha, a professor at Harvard’s T.H. Chan School of Public Health. ‘For a small nursing home it could be real money, but for bigger ones it’s more likely a rounding error.’ CMS has said it revised multiple rules governing fines under both administrations to make its punishments fair, more consistent and better tailored to prod homes to improve care. We are continuing to analyze the impact of these combined events to determine if other actions are necessary.’”

Hospital Patient Safety Problems Lead to Reduced Medicare Payments

While conveying the news about penalties for quality lapses in nursing homes, Kaiser Health News’ Rau had a different message regarding patient safety in hospitals. “Eight hundred hospitals will be paid less by Medicare this year because of high rates of infections and patient injuries. The number is the highest since the federal government five years ago launched the Hospital Acquired Conditions (HAC) Reduction Program, created by the Affordable Care Act. Under the program, 1,756 hospitals have been penalized at least once, a Kaiser Health News analysis has found. Hospitals complain that the ones that do the best job testing for infections and other threats to patients appear to be among the worst based on statistics, while their more lackadaisical peers look better than they might be. Supporters of the punishments argue that the penalties are warranted in prodding hospitals to improve quality. ‘The fact that everyone’s talking about it, from frontline nurses to boards of directors, is positioning patient safety where it should be, which is at the forefront of everyone’s minds,’ said Missy Danforth, vice president of healthcare ratings at the Leapfrog Group, a nonprofit devoted to patient safety.”

Paid Family Leave: On the Radar

Universal paid family leave (PFL): is it an idea whose time has finally come? Whether or not it materializes in the near future, the signs of growing support and advocacy are clearly increasing. There was the significant Harvard Business School “Caring Company” report discussed in the February Caregiving Policy Digest. Congressional members of both parties are sponsoring bills that would offer varying types of relief to caregivers. The compelling rationale for adopting a national program came in an article by AARP’s Lynn Friss Feinberg: “Caring for an aging family member with a serious health condition or disability can be stressful for employed caregivers when their needs are not being met by existing workplace policies. Because most family caregivers now hold paying jobs too, these caregivers need access to PFL benefits that enable them to fulfill both their caregiving and paid work responsibilities. Promoting access to PFL programs can facilitate family caregiving, help reduce economic hardships, and may reduce nursing home utilization. Workers should not have to choose between keeping their jobs and providing care to a seriously ill family member.” And from the National Center for Children in Poverty (NCCP) at Columbia University, in collaboration with The Arc of the United States (the Arc) has come a new study emphasizing how workers with disabilities and families that include people with disabilities use, need, and can benefit from paid family and medical leave. “Most people with disabilities or serious health conditions are eager to work to support themselves and their families, and to contribute meaningfully to society. Similarly, workers who provide unpaid care for loved ones with disabilities or serious health conditions typically also value both their professional responsibilities as workers as well as the responsibilities as caregivers. The successful workforce participation of people who have disabilities or people who provide care often requires access to supports, accommodations, and protection against discrimination. Paid family and medical leave policies, traditionally only offered by employers but more recently offered by an increasing number of state governments, can provide additional and vital sport for maintaining employment by allowing workers to take time away from work to address health needs.”

States Consider Tax Credits for Caregiving

While these intensifying efforts to move towards a national PFL system unfold, some states, reports Kaiser Health News’ Samantha Young, are considering an immediate boost to family caregivers in the form of a tax credit for caregiving expenses. California is at the forefront of this possible approach as it debates a bill authored by Fresno Republican state assemblyman Jim Patterson. “His bill would give family caregivers in California a tax credit of up to $5,000 annually to help offset their expenses. AARP is pushing similar bills in at least seven other state legislatures this year—Arizona, Illinois, Nebraska, New Jersey, New York, Rhode Island and Wisconsin—and AARP expects measures to be introduced in Florida, Massachusetts and Ohio. For Pam Sogge of Oakland California,” Young writes, “a tax credit would allow her to hire a home health aide for an additional three hours a week. Her husband, Rick Sogge, 61, has early-onset Alzheimer’s and becomes frantic when left by himself. Sometimes when she leaves him alone in another room of their home, he searches for her every two minutes. Because Mr. Sogge is still physically healthy, most of the couple’s caregiving expenses are for part-time help taking him on outings so his wife can work, run errands or go to the doctor’s office. ‘You have a very uncertain financial future. You don’t know what’s going to happen. You don’t know how long it’s going to take. So you’re very conservative,’ Pam Sogge, 56, said. ‘A tax credit, in a way, it’s permission and encouragement to get some help.’”

Guidance From CMS on HCBS Settings

CMS has provided long-awaited guidance to state Medicaid directors concerning the identification of settings that have the qualities of an institution in accordance with the HCBS-setting final rule issued in 2014. The guidance, in the form of answers to Frequently Asked Questions, discusses, “settings identified by the regulation as being presumed to have the qualities of an institution, unless CMS determines through a ‘heightened scrutiny’ review that the settings do not have the qualities of an institution and that the settings do have the qualities of home and community-based settings.” The FAQs focus on settings that have “the effect of isolating individuals receiving Medicaid HCBS from the broader community of individuals not receiving such services.”

Alzheimer’s Drug Trail Discontinued

You might say it was not a body blow but a mind blow—the startling and discouraging news from Biogen and Japanese partner Eisai that yet another beta-amyloid fighter had failed to show any impact on Alzheimer’s disease. The companies announced that they would be discontinuing trials of aducanumab, another Alzheimer’s drug hopeful that had crashed and burned in critical late-stage clinical trials. As Sy Mukerjee reported in Fortune’s Brainstorm newsletter, “a number of analysts across the biopharma spectrum expressed a sort of knowing sadness about this latest failure, which follows a trail of disappointments that have dogged companies like Eli Lilly, Pfizer, Merck, and countless others. There are no available treatments to address the underlying disease of Alzheimer’s; the last approved therapy, which only treats the condition symptoms, was approved well over a decade ago. Much of the commentary around these failures focuses on the central approach companies have taken in recent years: that is focusing on the ‘beta-amyloid hypothesis,’ which places the buildup of a kind of brain plaque at the center of drug development efforts, in lieu of targeting other biological targets. That strategy has come under increasing scrutiny. The question now is whether Biogen’s astoundingly expensive failure will shift the industry’s approach in a meaningful scale. To that end, there are several upstart companies looking to shake things up—including United Neuroscience, which is attempting to develop vaccines to actually prevent Alzheimer’s and other neurological disorders from occurring in the first place.”

Link Between Chronic Inflammation and Cognitive Decline

Amidst this latest disappointment, other AD-related developments made some news. AARP’s Beth Howard reported that “people who harbor high levels of chronic inflammation in midlife are more likely to experience memory loss and problems with thinking in subsequent decades, according to a new study in the journal Neurology—the first long-term look at the link between inflammatory blood markers and brain health. To reach their conclusion, which points to why things such as diet and exercise might be important in Alzheimer’s prevention, researchers used data from the Atherosclerosis Risk in Communities (ARIC) study at John’s Hopkins University, tracking more than 12,000 people with an average age of 57 for about two decades. They found that adults with the highest levels of inflammation markers in their 40s, 50s, and early 60s had a steeper rate of cognitive decline in their later years. It is not clear whether inflammation actually triggers brain deficits in old age, however. ‘It’s still possible that inflammation may simply be a result of underlying dementia rather than a cause,’ study lead author and postdoctoral fellow in neurology Keenan A. Walker said. ‘But by looking at inflammation during middle adulthood we can now confidently infer that inflammation comes first. It’s unlikely that you have degenerative changes at age 40 or 50.’”

Cognitive Impairment Prevention: Alternative Approaches

Weighing in on The New Old Age, the New York Times’ Paula Span told readers that the FDA was cracking down on over-the-counter supplements being touted as Alzheimer’s disease treatments. In February “warning letters or advisories were sent to 17 companies selling about 60 supplements with names like Cogni-Flex and Mind Ignite. There are however,” Span noted, “other ways people can reduce their risk of dementia: they include increased physical activity; blood pressure management for people with hypertension, particularly in midlife; and staying mentally active. The blood pressure recommendation got a boost in January with the latest findings from the Sprint trial, a multisite study stopped early in 2015 when intensive treatment of hypertension was shown to reduce cardiovascular events and deaths. Investigators continued the trial, however, with 9,361 participants and completed follow-up cognitive assessments. Their results, published in JAMA, show the intensive treatment group less likely to develop dementia than those in standard treatment, though not by a statistically significant margin. Intensive treatment did, however, significantly reduce participants’ risk of mild cognitive impairment, a frequent precursor to dementia. ‘To me, it was one of the most exciting findings to come along in years,’ said Dr. Kristine Yaffe, a neuropsychiatrist and epidemiologist at the University of California, San Francisco. ‘The same things we recommend for heart health turn out to be important for cognition. It’s a blossoming field.’”

Meanwhile, on the heels of reports from Jackson Hole, Wyoming, about a very novel theory, thus far unproved, of AD treatment (Caregiving Policy Digest, February 2019), comes a report * from California of yet another unlikely cure. According to Medscape’s Batya Swift Yasgur, MA, LSW, the Salk Institute’s senior staff scientist, Pamela Maher, PhD, and her team have found that analysis of an extract from the yerba santa herb—the name is Spanish for ‘holy herb’—identified the flavanone sterubin as the active component of the plant. Sterubin was found to have neuroprotective and anti-inflammatory effects. “We hope,’ Maher said, “that sterubin might decrease age-related changes in the brain, as well as perhaps other tissues, and this might lead to slowing the development of AD since old age is the major risk factor for the disease.”

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Caregiver Advise, Record, Enable ( CARE) Act: An Update

How fares the CARE Act? Emanating from AARP’s landmark 2012 study, “Home Alone,” the legislation has now entered the statute books of 40 states and may well become universal when all the advocacy for it is complete. Two appraisals of the law’s impact thus far have now appeared, one a global interim assessment from an AARP study team, and the second, a detailed look at the experience in one hospital system, the University of Pittsburgh Medical Center. The combined assessments portray a work-in-progress with clear positive results as well as remaining challenges. “During the site visits, AARP reported , “hospital staff consistently reported that, subsequent to the CARE Act implementation, family caregivers appeared more engaged and confident when taking the patient home. They added that, when they collaborated with family caregivers from the beginning of the hospital stay, family caregivers were more likely to ask important questions and provide the staff with information that would help ensure a person-centered holistic approach on the part of the hospital, as well as successful outcomes after hospital discharge and even during the hospital stay itself. Important early efforts in hospitals’ CARE Act implementation have often focused on the electronic health record (EHR) and the work processes regarding admission and identification of the family caregiver. Clarity among the roles of family caregiver, durable power of attorney, and emergency contacts facilitated better identification of the family caregiver. Importantly, successful ongoing engagement with the caregiver has required EHR design that ensured integration into usual care and discharge processes.”

In the second study , UPMC researchers conducted an intensive and structured investigation into the early CARE Act’s implementation throughout the very large medical complex. “Our results show that the inner organizational context and EHR capability were instrumental to the Act’s implementation and integration into workflow. UPMC leadership worked within organizational and time constraints to achieve compliance. They succeeded in making positive changes to the EHR to aid in identification, and frontline staff continued to educate present family members at high rates. Yet, opportunities for improvement exist and include refining the notification and instruction to the designated caregiver, reducing variation and knowledge among clinical professions, and improving the use of the EHR fields later in the inpatient stay.”

Home- and Community-Based Services in the Spotlight

Home- and community-based services receive extensive attention in recently published documents. From Manatt Health Strategies and the Center for Health Care Strategies, funded by the Scan Foundation and Milbank Memorial fund, comes an 82-page state “toolkit” designed to show states the way towards offering their low-income residents the wherewithal to access person-centered, cost-effective care options, thereby allowing older adults and adults with disabilities to live fuller and more satisfying lives. The material provides detailed recommendations for states to accomplish two objectives: “1) rebalancing or devoting a greater proportion of LTSS spending to home and community-based services instead of institutional care; In 2016, 57% of Medicaid LTSS spending was for community-based services, up from 18% in 1995, and 2) integration, or providing LTSS in a coordinated, comprehensive, person-centered arrangement focused on meeting beneficiaries full health and social needs; nearly half of states now use managed care to deliver LTSS within an integrated system.”

AARP, the Commonwealth Fund, and the Scan Foundation enlarge the focus to include “Home- and Community-based Services Beyond Medicaid (how state-funded programs help low income adults with care needs live at home).” The AARP/Commonwealth/Scan document offers profiles of nine states—Connecticut, Illinois, Massachusetts, Nebraska, New Jersey, North Dakota, Oregon, Pennsylvania, and Washington—that have helped support low income older adults and adults with physical disabilities at home. Most programs were started decades ago when Medicaid was still a relatively young program that emphasized nursing home care. The paper also highlights Washington State’s emerging innovation: the Medicaid Transformation Demonstration, which tailors support for near-poor older adults and family caregivers. Many states have sought to lower their future Medicaid risks by establishing one or more general revenue-funded programs designed to provide modest assistance to low income people who are not yet enrolled in Medicaid, thereby addressing unmet needs, preventing adverse events, and improving well-being. The report includes an appendix chart describing and comparing particular program components in nine states.

Another useful chart , this one developed by the Commonwealth Fund, provides a “quick reference guide to promising care models for patients with complex needs.” Twenty-eight individual programs are described in terms of their target populations, covered conditions, elements of person-centered care and outcomes.

The Challenges Caregivers and Patients Face With Post-Acute Care

The United Hospital Fund has published the fourth and final report on the challenges facing patients and caregivers who need post-hospital care. The reports, the Fund states, “explore how fragmented care settings and payment systems, unclear regulations, and information gaps all play a role in limiting the guidance hospital staff can provide patients and their families during the rush to arrange care in the home, a rehabilitation center, nursing home, or other setting after hospitalizations. The reports explain how patients and their families are often in the dark about their options, and must make care decisions without sufficient information and support at a time when they may be particularly frail and vulnerable. Earlier reports in the series dealt with why decisions about post-acute care matter so much, the illusion of choice in making such decisions, and healthcare provider perspectives on discharge planning from hospital to skilled nursing facility. All four reports can be downloaded from UHF’s website.

A study from the University of Pennsylvania seeks to shed new light on one post-hospital care decision: where to go—home or a skilled nursing facility. The JAMA study, authored by Dr. Rachel M.Werner and colleagues in Penn’s department of medicine and summarized by Modern Healthcare’s Maria Castellucci, “found, on the one hand, that Medicare patients discharged to home health had a 5.6% higher 30-day readmission rate compared with patients into a skilled nursing facility. On the other hand, the authors noted, home health saved Medicare $4,514 on average in the 60 days after the first hospital admission because their services cost marginally less than SNFs. The findings come as Medicare and other commercial payers increasingly push for less spending post-discharge by promoting alternative payment models and value-based purchasing. But even with the popularity of post-acute care, little is known about the differences and patient outcomes between’s SNFs and home health. This is the first study to compare at a large national scale the differences between the two settings. Hospitals likely prefer to discharge patients to SNFs considering 24/7 patient oversight, Werner stated. Not many hospitals participate in alternative payment models that require lower spending in post-acute care, but all are vulnerable to penalties from the Hospital Readmissions Reduction Program. Given the fact that outcomes don’t differ much between home health and SNFs but the costs do, Warner said there is an opportunity to change how home health is reimbursed to lower the vulnerability for readmissions. ‘You can imagine you can set up a home health benefit that would pay for more intensive care at home and do some of the treatments at home that SNFs otherwise do, which would be less expensive and more aligned with patient preferences and be better at preventing readmissions.’”

Post-Surgical Virtual Rehabilitation

For one category of post-surgical patient, orthopedic, the choice about rehabilitation care may come to pose less of a challenge. As FierceHealthcare’s Paige Minemyer reports , a preliminary study suggests that such patients may do just as well meeting with a virtual therapist at home as with a real live one in the facility “The virtual therapist, named VERA (Virtual Exercise Rehabilitation Assistant), and developed by Reflexion Health, guides patients through exercises prescribed by a physical therapist. The tech also monitors patients’ performance in those exercises allowing clinicians to tailor the recovery plan to their needs. The physical therapist receives the data on each patient’s progress and then checks in at least weekly to discuss progress and make any adjustments. ‘In this particular program’ said Janet Bettger, PhD, associate professor in Duke’s department of orthopedic surgery, ‘the therapists were able to monitor every component of what they prescribe and that’s a big difference from usual care.’ In the early pilot, the program shows promising results. The researchers found an average cost savings of $2,745 per patient treated using VERA, and safety and quality metrics were on par between the two approaches. Bettger said the patient experience was also positive. ‘Pilot participants who underwent a second knee replacement requested physical therapy through VERA on their second surgery.’”

Needed Devices Unaffordable for Many Seniors

Twenty five million Americans who are aging in place, writes Kaiser Health News’ Judith Graham, “rely not only on help from other people but on devices such as canes, raised toilets or shower seats to perform essential daily activities. A substantial number of those individuals, however, find it very difficult to afford those devices. Drawing upon a recent Johns Hopkins University study Graham writes, “60% of the seniors surveyed used at least one device, most commonly for bathing, toileting and moving around (20% use two or more devices). Needs multiplied as people grow older, with 63% of those 85 and older using multiple devices and getting personal assistance, compared with 23% of those between ages 65 and 74. The problem is that Medicare doesn’t pay for most of these non-medical services, with some exceptions. As a result, many elderly, especially those in or near the bottom of the income ladder go without needed assistance, even when they are enrolled in Medicaid. A partial step in the right direction was taken last year when Congress enacted the Chronic Care Act, which allows Medicare Advantage plans to offer supplemental benefits, such as wheelchair ramps, bathroom grab bars, transportation and personal care, to chronically ill members. But it’s unclear,” Graham notes, “how robust these benefits will be going forward; this year’s plans, which cover 21 million people aren’t offering much. Meanwhile 39 million people enrolled in a traditional Medicare are left out altogether.”

Loneliness Among Older Adults

Assistive devices to prolong the aging’s ability to navigate the onset of disability aren’t the only response needed for many seniors to remain vital and functional. “The headlines are alarming,” Judith Graham writes in another Kaiser Health News article: “Between 33 and 43% of older Americans report they are lonely. But those figures combine two groups: people who are sometimes lonely and those who are always so. The distinction matters because people who are sometimes lonely don’t necessarily stay that way; they can move in and out of the state. And the potential health impact of loneliness—a higher risk of heart disease, dementia, immune dysfunction, functional impairment and early death—depends on its severity. People who are severely lonely are at ‘high risk,’ while those who are moderately lonely are at lower risk, said Julianne Holt-Lunstad, a professor of psychology and neuroscience at Brigham Young University. ‘Figuring out how to promote quality relationships for older adults who are lonely is tricky,’ she said. ‘While we have decades of research in relationship science that helps characterize quality relationships, there’s not a lot of evidence around effective ways to create those relationships or intervene when problems surface. We have to be very strategic about efforts to help people, what it is they need and what we’re trying to accomplish. We can’t just throw programs at people and hope that something is better than nothing.’” 

Overuse of Antibiotics in Older Adults

Americans are awash in pills. Many are ridiculously expensive. Many cure or mitigate disease. Many have debilitating side effects. Two classes of drugs—antibiotics and opioids—clearly fall into the latter two categories. Paula Span begins her New York Times’ The New Old Age column on the use and overuse of antibiotics by describing 68-year-old Caryn Isaacs’ annual Medicare wellness visit when she unexpectedly learned she had a urinary tract infection. The remedy: Cipro. “They’re actually plenty of reasons for older people to avoid Cipro and other antibiotics known as fluoroquinolones, which have prompted warnings from the Food and Drug Administration about the risk of serious side effects. Antibiotic overuse in general contributes to a serious public health threat by creating drug resistance, as infectious bacteria adapt to the medications; two million Americans get antibiotic-resistant infections annually, the CDC has reported, and 23,000 die from them. For more than a decade, however, the agency’s most frequent target has been fluoroquinolones. It has warned that this class of antibiotics increases the risk of tendinitis and tendon rupture, particularly in older adults; can cause the nerve damage called peripheral neuropathy; and can lead to hypoglycemia. Yet what class of antibiotics did the CDC determine was most commonly prescribed for older adults? Fluoroquinolones. Moreover, doctors often prescribe these medications unnecessarily; upper respiratory infections—colds sinus infections, bronchitis—trigger most prescriptions, but those infections are typically viral, not bacterial and thus impervious to antibiotics. As Dr. Sarah Kabbani, an infectious disease specialist at the CDC, pointed out, ‘when antibiotics are needed, they are life-saving drugs.’ ‘We want patients to get antibiotics when they need them—the right drug at the right time in the right dose—and not when they don’t, said Dr. Katherine Fleming-Dutra, deputy director of CDC’s Office of Antibiotic Stewardship. As for Karen Isaacs, she didn’t do very well on Cipro. She suffered severe chest pain—‘I thought I was having a heart attack’—and felt anxious and irritable. She finished the week-long course of the drug anyway and her personality changes have receded, but occasional twinges of chest pain persist along with a sense of weakness.” 

Severe Pain Sufferers Hurt By Opioid Regulations

The epidemic of opioid overuse addiction and death has become a national crisis. But contrary to the consensus on tightening antibiotic prescribing practices, the opioid crisis reaction of ever stricter prescribing regulations is setting off some alarm bells among medical experts tasked with alleviating chronic-pain patients’ travails. In a March letter to the CDC, reports the New York Times Jan Hoffman and Abby Goodnough, more than 300 of those experts, including three former White House drug czars, “contend that the federal government-issued course correcting guidelines are harming one group of vulnerable patients: those with severe chronic pain, who may have been taking high doses of opioids for years without becoming addicted. They say the guidelines are being used as cover by insurers to deny reimbursement and by doctors to turn patients away. As a result, patients who could benefit from the medications are being thrown into withdrawal and suffering renewed pain and a diminished quality of life, even to the point of suicide. The guidelines, defenders argue, say doctors should discuss the costs of a high-dose regimen with pain patients and press for a prudent taper. They do not say those patients’ drugs should be summarily reduced. They advise doctors to prescribe opioids to new patients only for a short time, and with a daily dose below 90 morphine milligram equivalents (MMEs). That recommendation has prompted many states and monitoring systems to impose a hard stop at that level for all patients except those with cancer or in end-of-life care. Aetna, one of the country’s largest health insurers, placed a limit of 90 MMEs per day on its members last year based on the CDC guidelines. The stricter daily limits, said company spokesman Ethan Slaven, ‘are part of our efforts to help reduce the potential for misuse and diversion of the drugs.’ One opioid expert, Dr. Anna Lembke, medical director of addiction medicine at Stanford, declined to sign the March letter, saying the guidelines were sufficiently moderate. The remedy to the problems detailed in the letter, she said, was to educate primary care doctors about how to provide ‘safe, compassionate, patient-centered tapers when medically indicated,’ which can be a protracted, delicate process. Responding, Dr. Stefan G. Kertesz, addiction medicine professor at the University of Alabama at Birmingham, acknowledged that tapering was a worthy goal. ‘But more typically what we are seeing are people who report non-consensual tapers.’”

In Home- and Community-Based Palliative Care (HACP): Don’t Confuse It With End-of-Life Care

A plea for drawing a clean line between palliative and end-of-life care comes from University of Southern California gerontologist Anna Rahman, PhD. “Recent developments in the emerging field of home- and community-based palliative care (HACP) have the potential, Rahman writes in a Health Affairs blog post, “to expand access to palliative care, but also risk compromising a core tenet of palliative care practice. The often-cited definition given by the Center to Advance Palliative Care (CAPC) includes the following language: ‘palliative care is provided by a team of palliative care doctors, nurses, social workers, and others who work together with the patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.’ The phrase ‘at any stage’ is integral to this definition because it highlights the difference between palliative care and end-of-life care. Consistently conflating palliative care and hospice care threatens to undermine our field’s credibility and our ability to help patients who could benefit from the extra layer of support palliative care provides. It is not that many very sick patients near the end of life do not need HACP. They do. But so, too, do many others: the chemo patient who is expected to survive his cancer, the transplant patient awaiting a liver, the dementia patient whose caregiver is exhausted, and we could go on. Right now, HAPC could rightly be viewed as a type of hospice care. The danger with this view is that consumers will resist HAPC in the same way that they have resisted hospice care. We in our field have worked hard to distinguish palliative care from hospice care as a strategy for promoting access to this extra support. We need to work even harder.”

‘The Art of Dying Well’ — A New Book From Katy Butler Addresses Dementia Care

Author, journalist, and end-of-life speaker Katy Butler has produced an important and moving book about achieving a “good end of life.” Emanating from her own experience witnessing her father’s decline into dementia, Butler, blogging at The Conversation Project, observes that “if there was one silver lining in my father’s difficult, medically-prolonged decline, it is this: it showed me that dementia can wreak havoc not only on the life of the afflicted person, but on family caregivers. And it encouraged me to think more explicitly about my values and the peculiar moral and medical challenges posed by dementia. At the moment I’m a fully functioning moral human being, capable of empathy, eager to protect those I love from unnecessary burdens and misery. If I develop dementia—which is, after all, a terminal illness—I may lose that awareness and care only about myself. With that in mind, I have written a letter in plain, common sense language, rather than legalese, as an amendment to my advance directive. I have sent it to everyone who may act as my guardian, caregiver or medical advocate when I can no longer make my own decisions. I want to free them from the burden of future guilt, and that is more important to me than whether or not my letter is legally binding on healthcare professionals.” The letter, which Butler includes in her book, contains 19 requests covering the full-spectrum of decisions that might confront her loved ones during a protracted and terminal illness. Some examples: ask my doctor to deactivate all medical devices, such as defibrillators, that may delay death and cause pain; do not force or coax me to eat; do not agree to any test results that would be meaningless, given my desire to avoid treatments that might be burdensome, agitating, painful, or prolonging of my life or death; do keep me out of physical pain, with opioids if necessary; if I must be institutionalized, please do your best to find a place with an art workshop and access to nature, if I can still enjoy them.”

Shifting the Patients-As-Consumers Paradigm

The concepts of individuals seeking healthcare as “consumers” and healthcare services as a “marketplace” have become fixtures of policy debate and discourse since the 1970s. In the latest issue of Health Affairs a strong dose of pushback arrives in an article by Rutgers University health policy professor, Michael K. Gusmano, PhD, Hastings Center president, Mildred Z. Solomon, and Hastings research scholar, Karen J Maschka. “Patient centered care, yes; patients as consumers, no,” the trio declare. “Early references to patients as ‘consumers’ were made by patient advocates who were attempting to challenge professional and corporate dominance in healthcare. In contrast to the early use of these terms to connote ways of empowering patients, ‘consumer-driven’ and ‘consumerism’ are now associated with market-oriented health reforms that place a burden on patients to solve cost and quality problems. Patients can be construed as consumers only if they are operating within a market. But healthcare is not a market in the usual way that markets are defined. While it is wise to help patients make more informed decisions about the cost of care and to grow in their ability to make quality comparisons across health systems, the main driver of healthcare costs is not consumer demand, but rather the introduction of new technologies and the unwillingness on the part of political leaders to regulate prices—or at least use government bargaining power as leverage to negotiate lower prices. Conflating consumer approaches with authentically patient-centered approaches will exacerbate a growing gap. In healthcare delivery and health policy, a patient-centered approach affirms the ethical principles of respect for persons and justice while striving to make the health system more responsive to patient’s values and preferences. There are some patient-centered approaches, such as patient engagement and activation, that yield substantial improvements in health outcomes. Pursuing the sensible goal of creating a patient-centered health system will be undermined if consumer metaphors prevail. Patient-centered approaches aim to ensure clinical care that can meet patient’s preferences and needs. That is different from a consumer orientation calling on patients to be prudent purchasers of medical care services. The former approach empowers patients. The latter expects patients to solve society’s cost-containment challenges.”

You’re Invited!

Please join The Rosalinde and Arthur Gilbert Foundation , the Helen Daniels Bader Fund , A Bader Philanthropy, and  Family Caregiver Alliance for a reception honoring the recipients of the 2018 Innovations in Alzheimer’s Caregiving Awards during the Aging in America 2019 (#AiA19) Conference .*

Tuesday, April 16 | 6 p.m. to 8 p.m.

Hyatt Regency New Orleans 

601 Loyola Avenue | New Orleans, LA 70113

Room: Imperial 5 (Level 4)

Hors d’oeuvres and beverages will be served.

* You do not need to be registered for AiA19 to attend the reception. We welcome ALL, local and national.

Download PDF flyer and share.

Visit our webpage for further information on the winners .

FCA at AiA19

If you’re planning to attend the Aging in America 2019 Conference , please join Family Caregiver Alliance at the following symposium events:

Launching an Online Resource for Comparing Evidence-Based Dementia Caregiving Programs

When: Monday, April 15 | 10 a.m. to 11:30 a.m.

Room: Celestin C (Level 3) | Hyatt Regency New Orleans

Home Alone 2.0: What We’ve Learned About Family Caregivers Who Perform Complex Care Tasks

When: Wednesday, April 17 | 3:30 p.m. to 5 p.m.

Room: Strand 4 (Level 2) | Hyatt Regency New Orleans

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CREDITS

Editor: Alan K. Kaplan, (attorney and health policy consultant)

Contributor: Kathleen Kelly (executive director)

Layout: Francesca Pera (communications specialist)

Send your feedback and/or questions to policy_digest@caregiver.org .

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FCA's Connections e-newsletter focuses on issues and information important to family caregivers. The newsletter regularly covers tips, articles, and helpful advice that can assist families with the numerous daily care tasks that caregiving for loved ones presents—including the often overlooked “caring for yourself.” While much of the content can prove helpful to caregivers nationwide, the events included are local to the six-county region of FCA’s Bay Area Caregiver Resource Center.

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