Read Caregiving Policy Digest on a webpage.

In This Issue: Medicare-for-all? | Saving pre-existing condition coverage | MA plans on the rise | IG sounds alarm on MAO service denials | Bellweather Maine | Arkansas Medicaid roll cuts | CMS accreditation transparency moves | A baby step for the national Family Caregiving Advisory Council | OTC hearing aids | Justice in Aging cautions on state Medicaid family assistance contributions | Overseeing ambulatory surgery | Falling SNF occupancy rates | The “true costs” of caring for aging adults | Alzheimer’s impacts by race and ethnicity | Paid family leave in California | High-intensity rehab at the end of life | The dangers of Medicaid work requirements | The terror of losing pre-existing condition coverage | Lying to dementia sufferers | Insured Americans’ residual cost burdens | Too much elderly breast cancer surgery? | The perils of too much medical testing | Remote patient monitoring surges | and 82-years-young Elizabeth Shepherd enlightens 20-something med students.

Medicare-for-All: Disabusing Administration Lies

Open season for Medicare and Obamacare enrollment, along with the approaching midterm elections, forms the backdrop for a slew of recent healthcare related developments. For starters, writing in USA Today, Pres. Trump lambasted proponents of a Medicare-for-all healthcare system. “The Democratic proposal,” Trump argued, “would establish a government-run, single-player healthcare system that eliminates all private employer-based healthcare plans and would cost an astonishing 32.6 trillion dollars during its first 10 years. Furthermore, Democrats would gut Medicare with their planned government takeover of American healthcare. The Democrats’ plan means that, after a life of hard work and sacrifice, seniors will no longer be able to depend on the benefits they were promised. In practice, the Democratic Party’s so-called Medicare-for-all would really be Medicare for none.” “An absurd tissue of lies,” is the headline on a response by Vox’s Matthew Yglesias. The president’s op-ed, he responded, “is so dishonest that some clever editor appears to have subversively snuck links into the text to debunk some of its key claims—it’s hard to believe that Trump or his communication staff would have done so. Democrats’ Medicare-for-all proposals would indeed replace today’s Medicare program with a similarly structured, but much more generous program run by the same agency. The idea in other words, is to give seniors a more generous version of Medicare and extend Medicare coverage to more people. The downside is, obviously, you’d need to raise taxes quite a bit to do that. But Trump wants to make elderly people think Democrats are talking about somehow taking the benefits away—and that just isn’t true.”

Pre-Existing Conditions Front and Center

While mega-health system reform is not on the front burner as November 6 nears, there is one issue that is: Universal protection for coverage of pre-existing conditions. Throughout the country, the fate of that increasingly popular element of Obamacare is looming front and center as a deciding factor in closely contested House and Senate races. “For the first time in our history,” writes Commonwealth Fund president David Blumenthal, “Americans are agreeing that even if you are sick you should be able to find private health insurance coverage you can afford. Both political parties, in fact, have embraced the central tenet of Obamacare. This development is historic. Before the passage of the Affordable Care Act, Americans broadly embraced a national obligation to ensure the elderly, the poor, and the disabled. We’ve now added the sick to this list. If the past is prelude there will be no retreating from this commitment. Once acknowledged, commitments, like Medicare and Medicaid, are virtually impossible to clear back.”

But pledging allegiance to the maintenance of coverage protections is not the same thing as explaining how to achieve them or how to square the promise with actions, including lawsuits that the Republicans have pursued to abolish ACA provisions that had enabled insurance markets to forgo medical underwriting. Surveying various political battlegrounds The Washington Post’s, Tracy Jan observed , that, “after being a drag on Democratic candidates for several election cycles, Pres. Obama’s 2010 healthcare law is now threatening Republicans who have spent years railing against it and seeking its repeal. In August, Senate Republicans up for reelection—Dean Heller in Nevada, Roger Wicker in Mississippi, and John Barrasso in Wyoming—introduced a bill to require insurers to continue selling plans to people with pre-existing conditions in the event that Republicans prevail in a constitutional challenge pending in a Texas district court. But health policy analysts have said the legislation does not prevent insurers from excluding specific health conditions from coverage. In Missouri—a state where nearly 1/3 of non-elderly residents have health conditions that could have resulted in health insurance denial—Democratic Sen. Claire McCaskill, running for reelection, has taken to asking voters who attend her town halls to stand if they have a pre-existing condition. The first time she did it during a state Democratic fundraising dinner in June, few in the ballroom remained in their seats. Pres. Trump, who won Missouri by more than 18 points in 2016, said in September while stumping for McCaskill’s opponent that they would always protect pre-existing conditions. The President, whose administration argued in the Texas suit that ACA protections for pre-existing conditions should be declared unconstitutional, did not say how.”  

Surge in Medicare Advantage Plans for 2019 Open Enrollment

Amid the twists and turns of the ACA saga, including the somewhat surprising viability of the Obamacare marketplace, the Medicare open enrollment season is displaying a surging array of Medicare Advantage (MA) options alongside the still dominant fee-for-service/Medigap plans. Sparked by the Trump Administration’s enthusiastic support in the form of large payment increases, the number of insurers offering MA plans has jumped. According to Kaiser Health News’ Phil Galewitz, “14 new companies have begun selling Medicare Advantage plans for 2019, several more than a in typical year. Overall, Medicare beneficiaries can choose from about 3,700 plans for 2019, or 600 more than this year. CMS expects Medicare Advantage enrollees to jump to nearly 23 million people in 2019, a 12% increase. Enrollee shopping for new plans this fall will likely find lower or no premiums and improved benefits, CMS officials project. For-profit Medicare Advantage insurers made a 5% profit margin in 2016, twice the average of Medicare plans. Overall, according to the Medicare Payment Advisory Commission, that’s slightly better than the health insurance industry’s overall 4% margin reported by Standard and Poors. Those profit margins could expand inasmuch as the Trump Administration boosted payments to MA plans by 3.4% for 2019, 0.45 percentage points higher than the 2018 increase.”

Medicare Advantage Denials of Service and Payment: An Attempt to Increase Profits?

In the wake of these expansionary figures, however, HHS’s Inspector General has voiced a cautionary note in a report that raises concerns about Medicare Advantage Organizations’ (MAO’s) service and payment denials. “A central concern about the capitated payment model MA plans use,” the IG’s report observes, “is the potential incentive for them to inappropriately deny access to services and payment in an attempt to increase their profits. When beneficiaries and providers appeal preauthorization payment denials, MAO’s overturned 75% of their own denials during 2014 to 16, overturning approximately 216,000 denials each year. During the same period, independent reviewers at higher levels of the appeals process overturned additional denials in favor of beneficiaries and providers. The high number of overturned denials raises concerns that some MA beneficiaries and providers were initially denied services and payments that should have been provided. This is especially concerning because beneficiaries and providers rarely use the appeals process, which is designed to ensure access to care and payment. During 2014 to 16, beneficiaries and providers appealed barely 1% of denials to the first level of appeal.”  

Universal Home Care and Gov. LePage Replacement on the Ballot in Maine

Maine has emerged as one of the 2018 election’s bellwether states, as its voters prepare to voice their verdicts on the Medicaid expansion impasse that has been created by outgoing Gov. Paul R. LePage, as well as on a far-reaching ballot initiative that would give the state the nation’s first universal home healthcare program. In the upcoming gubernatorial election, the Washington Post’s Paulina Firozi reports , “candidates who could follow LePage appear to be more open to implementing Medicaid expansion. Meanwhile, the ballot initiative, known as Question One proposes that homecare services be available to all residents, at no cost, regardless of income. Adults, reports Kaiser Health News’ Judith Graham, “would be eligible for the program when they need help with at least one activity of daily living. Services covered will include care from aides and companions; speech, physical and occupational therapy; counseling; home repairs; transportation; respite care; devices for people with disabilities; and even, occasionally, small rent subsidies. More than 21,000 people could qualify for home care services under the new program. Funding would come from a new 3.8% tax on wages and nonwage income that isn’t taxed by Social Security, a threshold of $128,000 per person in 2018. Between $180 million and $310 million will be raised annually, according to various estimates, and the program would be fully implemented by January 2022. The political battle over Question One is fierce, although no one questions the need for affordable home care for seniors and people with disabilities. In AARP’s most recent LTTS ‘scorecard,’ Maine ranked last in the nation on affordability of home care.”  

Former Maine Health Commissioner Mary Meyhew Appointed New Medicaid Administrator

Meanwhile Maine has just provided the Medicaid program with its new director, as Pres. Trump announced his appointment of Mary Mayhew, Gov. LePage’s former top health official, as CMS’ new deputy administrator. Mayhew, in her capacity as Maine’s Health and Human Services Commissioner, strongly supported the governor’s opposition to ACA-founded Medicaid expansion.  

Arkansas Medicaid Work Requirements Fallout: 8,500 Removed from Rolls

About 1,600 mile south of Maine, Arkansas has just announced the removal of a further approximately 4,000 residents from the state’s Medicaid rolls for failure to meet recently implemented Medicaid expansion work requirements—bringing the total this fall to almost 8,500. As AP’s Andrew Demillo reports , “Arkansas was the first state to implement a Medicaid work requirement after the Trump Administration said it would allow states to require participants to work to keep coverage. The 80-hour work requirement only applies to the state’s Medicaid expansion, and not the traditional Medicaid program. ‘We have gone to great lengths to ensure that those who qualify for the program keep their coverage,’ Republican Gov. Asa Hutchinson said. ‘Arkansas Works provides opportunities for individuals to gain employment or work training. It also allows us to concentrate resources on those who need it most.’ Sam Brooke, legal counsel for the Southern Poverty Law Center, one of three groups that have sued Arkansas over the work mandate, was quick to disagree. ‘This is an absolute train wreck,’ he said, ‘and it is a slow moving train wreck that the state can stop at any time. Unfortunately, these numbers are exactly what we and everyone who was looking at this predicted would happen if this went into effect.’”

States’ Approved and Pending Medicaid Waivers Tracked by Kaiser Family Foundation

Keeping up with all the state waiver developments affecting Medicaid coverage has garnered the attention of the Kaiser Family Foundation; in a new issue brief , the Foundation offers a comprehensive examination of the “current landscape” of section 1115 Medicaid demonstration waivers, including application priorities, approvals to date, and future prospects.

CMS Administrator Verma Responds to Poor Oversight of Health Facility Accreditation

Responding to news articles and congressional hearing revelations earlier this year concerning oversight lapses in health facility accreditation inspections, CMS has announced several initiatives designed to improve the performance of the survey process. Announcing the initiatives, CMS, Administrator Seema Verma stated “they will enhance and strengthen its oversight and quality transparency of accreditation organizations (AOs) in three ways: one) the public posting of AO performance data; two) a designated process for AO validation surveys; and 3) the release of an Annual Report to Congress. Taken together, these efforts will provide important insights to the public by posting more detail—accredited hospitals, complaints, surveys, out of compliance information, and performance data for AOs themselves—thereby offering the public more nuanced information than accreditation status alone provides. The agency is currently prohibited by law, however, from disclosing the actual surveys done by AO’s, except for surveys of home health agencies and services related to an enforcement action.”

Small Step Forward for the RAISE Family Caregivers Act

The first step, albeit a baby one, has been taken by Congress towards implementing the January-enacted RAISE Family Caregivers Act: a $300,000 appropriation to establish the nation’s first national Family Caregiving Advisory Council. As reported by Minnesota Star Tribune’s Jackie Crosby, “the Council is seen as key to implementing the act. It will bring together informal caregivers and older adults as well as employers, healthcare providers, senior housing representatives, community leaders, nonprofits, and all levels of government in an effort to address a wide scope of social, cultural and policy solutions.”

NOTE: The Administration for Community Living (ACL) is seeking nominations for members of the public to serve on the Family Caregiving Advisory Council. The deadline is Monday, December 3, 2018.

Self-Fitting Hearing Aid Approved by FDA

The Food and Drug Administration has approved the marketing of the first self-fitting hearing aid controlled by the user without assistance from a healthcare provider. “The Bose hearing aid,” the FDA announced , “is a user-fitted wireless air conduction hearing aid. Air conduction hearing aids work by capturing sound vibrations through one or more microphones. The signal is processed, amplified, and played back to an earphone placed in your canal. Patients can adjust the hearing aid through a mobile application on their phone. This technology enables users to fit the hearing aid themselves, in real-time and in real-world environments. While users may fit and control the Bose hearing aid on their own, the device must comply with applicable federal and state laws regarding the sale of hearing aids, including state laws that might require hearing aids to be purchased from or dispensed by a licensed hearing aid dispenser. The FDA is in the process of drafting proposed regulations for a new category of over-the-counter hearing aids as required by the FDA Reauthorization Act of 2017.”

Justice in Aging Issue Brief on Presumption of Voluntary Caregiver Support by Medicaid At-Home Support Programs

Justice in Aging has cast a critical eye on an important aspect of state Medicaid programs’ assessment of caregiver support in determining how much at-home assistance Medicaid will provide. The bottom line, according to the organization’s Issue Brief : “When assessing how much assistance a person needs, a state Medicaid program must consider the amount of available help from family and friends and adjust the amount of approved assistance accordingly. States are not allowed, however, to compel family and friends to provide an enrollee with at-home assistance. In other words, a Medicaid program cannot presume that voluntary assistance is available, or available at a specific level. An Ohio appeals court recently emphasized the requirement that assistance be voluntary. In the case, the Ohio Medicaid program reduced the amount of at-home assistance it would cover for a 44-year old woman suffering from Down syndrome, autism, intellectual disabilities, and cerebral palsy. The enrollee’s brother provided around-the-clock support, with some of his hours paid by Medicaid. The Medicaid program then declared that the brother should be providing more of his support unpaid and reduced the number of approved hours of support for his sister. The Ohio appeals court disagreed, however, finding that ‘the compulsion of natural supports is antithetical to law.’ Finding the right balance of family assistance and societal support is an important policy matter,” Justice in Aging stated. “Such decisions in the Medicaid context should be made consistently, fairly, and in accordance with federal requirements. Trying to enforce family responsibility by offering inadequate care is a recipe for neglect. On the other hand, following federal law and respecting the voluntary nature of assistance allows for older persons and their families to utilize Medicaid assistance when they need it.”  

Outpatient Surgery Centers: A Call for Better Oversight and a Response

Earlier this year a joint Kaiser Health News and USA Today investigation dove deeply into the world of outpatient surgery centers; its conclusion: “a hodgepodge of state rules governing outpatient centers allow some deaths and serious injuries to go unexamined. And no rule stops a doctor exiled by a hospital for misconduct from opening a surgery center down the street. The KHN/USA Today examination raises questions about the need for more robust oversight of surgery centers, where public access to important information, such as surgical outcome data, tends to be more limited than what’s available about hospitals. The gap persists even as the nation’s 5,600 surgery centers have surpassed hospitals in number and taken on increasingly complex procedures. Scrutinizing unexpected deaths is the norm for U.S. hospitals. The Joint Commission, their leading accreditation body, recommends that members send the accreditor reports of unexpected deaths so that lessons from one tragedy might prevent another. The top surgery center accreditation body has no similar guideline. Bill Prentice, executive director of the Ambulatory Surgery Center Association, said the centers safely perform millions of procedures, from tonsillectomies to knee replacements each year. In at least 17 states, however, health facility officials confirmed they had no way to know a patient died because surgery centers have no duty to report. Thus, surgery centers had no mandate to notify an official concerning such cases as a 33-year-old Missouri man who died after finger surgery, a 66-year-old Georgia woman who died after an eye procedure, or a 60-year-old in Oklahoma who died soon after a total hip replacement.”

That the investigations findings have not gone unnoticed is apparent in the mid-October announcement that the Leapfrog Group will begin publishing safety and quality performance of hospital outpatient surgery departments and ambulatory care centers in 2020. As Modern Healthcare’s Maria Castelucci reports , “Leapfrog will ask centers to voluntarily submit performance data. Ambulatory care centers will likely have to submit infection rates, medical or nursing staff information, procedure volume, outcomes data, and patient experience results. ‘Ambulatory care centers are attractive to many employers, purchasers, and patients,’ said Leah Binder, Leapfrog Group’s CEO, ‘because you can avoid a hospital stay, the surgery can be less invasive and even the price can be lower. But it’s not a good idea to go to one of those settings if the quality is not good—and that is what we want to know.’”

SNF Occupancy Rates See Decline

Where have all the residents gone? The question arises from New York Times’ writer Paula Span’s report on falling skilled nursing facility (SNF) occupancy rates. “The most recent quarterly survey from the National Investment Center for Seniors Housing and Care reported that nearly one nursing home bed in five now goes unused. Occupancy has reached 81.7%, the lowest level since the research organization began tracking this data in 2011, when it was nearly 87 percent. Such national statistics mask considerable local differences. ‘The best facilities still have 100% occupancy and a waiting list—that’s how you know they are good,’ said Nicholas Castle, a health policy researcher at the University of Pittsburgh.” In 2015, the National Center for Health Statistics reported that more than one-third of beds were empty in some states, including Illinois, Iowa, Nebraska, Oklahoma, and Utah. Texas wasn’t far behind. Span reviews a number of explanations, including the impact of increasing hospital “observation stays,” the growth of Medicaid home and community-based services coverage, and the migration of surgeries from inpatient to outpatient surgical centers. “On the other hand,” she continues, “this could prove a temporary crisis. When the baby boomers enter their 80s and need residential care, occupancy could pick up again. What about those who already live in nursing homes or move in over the coming years because they need the round-the-clock supervision no other kind of facility offers? Despite extensive federal regulations, nursing homes have no minimum staffing requirements (though some states do have some). So families with relatives in nursing homes might want to pay particular attention. If occupancy falls, maybe your loved one gets a private room. Or maybe the call button takes even longer to answer.”

New AP-NORC Poll on Caregiving

The latest AP-University of Chicago NORC poll on caregiving offers some important insights into “the true cost of caring for aging adults.” According to the new study , “for about one quarter of America’s informal caregivers, the amount of time they spend providing care each week is the equivalent of a full-time job. Beyond the hours they spend caregiving, 8 in 10 pay for caregiving costs out of their own pockets, with 13% spending $500 or more a month. For the majority of caregivers with incomes of less than $50,000, these costs impose a significant burden. 43% of these caregivers have dipped into their personal savings, and 23% have reduced how much they save for their own retirement, suggesting that the financial impacts of informal caregiving are significant and long-lasting. Many who take on a caregiving role face significant health challenges themselves. Fully 39% of caregivers have a health condition, physical limitation, or mental health condition that affects their daily life or limits their own activities, and 40% of this group say that providing care makes it harder to manage their own health. Despite these challenges, however, a majority of informal caregivers view their role as an important, even essential part of their personal identity, and most find healthy ways to cope with the stresses of providing long-term care—with 63% praying or meditating, and 51% spending time outside. At the same time, some caregivers employ such unhealthy behaviors as sleeping less, avoiding talking to people about their situation, drinking more alcohol, or smoking or using tobacco more.”

Alzheimer’s Disease Growth Forecast

New CDC projections of the expected onset of Alzheimer’s disease over the next four decades contain a first-of-a-kind population forecast categorized by age, sex, race, and ethnicity. As reported by CBS News’ Ashley Welsh, “the number of people living with Alzheimer’s disease and related dementias will double by 2060. In 2014, there were 5 million people in the U.S. with Alzheimer’s disease and related dementias—about 1.6% of the U.S. population. That number is projected to grow to 13.9 million, nearly 3.3% of the population in 2060. CDC researchers believe Hispanic Americans will have the largest increase due to their expected population growth in the coming decades. Currently, among adults age 65 and older, African-Americans have the highest prevalence of Alzheimer’s disease and related dementias, at 13.8%. This is followed by Hispanics, at 12.2%; non-Hispanic whites at 10.3%; American Indian and Alaska natives at 9.1%; and Asian and Pacific Islander’s at 8.4%. By 2060, the researchers projected there will be more than 7 million non-Hispanic whites, 3.2 million Hispanics, and 2.2 million African-Americans with Alzheimer’s disease and related dementias in the U.S.”

California Makes Alzheimer’s Research Inclusive of Underrepresented Populations

Release of the projections followed California’s enactment in September of a law designed to make Alzheimer’s disease research more inclusive of at-risk and underrepresented populations. “California is uniquely positioned to combat Alzheimer’s disparate incidence with increased data collection within its diverse communities,” the law’s chief sponsor state Sen. Ben Hueso stated . “By expanding research efforts to better understand why these groups are diagnosed at higher rates, the state will be better positioned to craft solutions specifically tailored to those most greatly affected.”

Report Documents Gaps and Solutions to California’s Paid Family Leave (PFL)

California is also the source of a new comprehensive report documenting shortcomings in the state’s Paid Family Leave system (PFL). “California’s PFL provides up to six weeks of partial pay to eligible workers who take time off work to care for a new child or seriously ill family member. PFL is funded entirely by workers whose payroll taxes contribute to the State Disability Insurance program administered by the Employment Development Department. Although approximately 18.1 million California workers are covered by PFL, many aren’t: contractors, the self-employed, and many public sector employees are left out of eligibility. Even if covered employees learn about PFL, people are not apt to use the benefit for many reasons, including insufficient wage replacement, lack of job protection, and confusion or hassles with the application process.” The report urges that policies and programs going forward be more accessible, equitable, and transparent.

End-of-Life Rehab: Is It Necessary?

University of Rochester Medical Center researchers have published a study they believe reveals “a growing trend of potentially unnecessary—and harmful—high intensity rehabilitation services for residents of nursing homes nearing the end of life. The study finds that this trend, which may be driven by a desire to maximize reimbursement rates, is on the rise for patients in the last 30 days of life, indicating that these services may be interfering with appropriate end-of-life care.” The study, analyzing data from 647 nursing facilities in New York State, focused on terminal residents who received very high or ultrahigh physical, occupational, and speech rehabilitation services. The authors found that residents receiving services increased by 65% between 2012 and 2015 and that most of the rehabilitation therapy residents received was concentrated in the last several days of life. They also found that there was a significantly higher use of the services in for-profit nursing homes compared to not-for-profit homes. The authors acknowledge that “some level of rehabilitation may be necessary and appropriate for patients approaching the end of life, such as speech therapy, which can assist with difficulties in swallowing. However, many of the goals of these therapies can be attained at lower intermediate levels of intensity, and ultrahigh levels for patients nearing end of life are generally unnecessary and, in many instances, can be harmful and interfere with appropriate care.”

Work Requirements Impact the Working Poor Substantiated in New Report

“Work Requirements and Safety Net Programs” is the title of a new Brookings Institution- Hamilton Project report that concludes that “among those out of the labor force a large number of Medicaid participants who would face new work requirements cycle in and out of the labor force and would thus lose benefits at certain times. Among those out of the labor force for the entire two-year study period, health concerns were the overriding reason for not working, even after moving those who receive disability benefits from the sample. The older portion of the population newly exposed to work requirements is more likely to be out of the labor force for extended periods of time. Among this group, again, health reasons are the overriding factor in not working. Looking at snapshots of work experience, such as a single month, inflates both the number of participants who are out of the labor force and the number of people who work sufficient hours to satisfy work requirements. There are safety net levers that could be used to pull those out of the labor force into work. Raising the return to work through, for example, the Earned Income Tax Credit or other measures, creating training or educational opportunities that can increase individuals’ human capital, and providing childcare or improved treatment and medical care to reduce health barriers to work could make full attachment to the labor force more viable for many individuals.”

Hiring In-Home Help

Montgomery County, Maryland’s Aging and Disability Services agency has produced a valuable resource guide to hiring in-home eldercare. The 18-page publication contains detailed discussions of all aspects of selecting and employing caregivers, as well as an eldercare needs checklist, a sample employee background questionnaire, and a sample employment contract.

NOTE: Family Caregiver Alliance’s fact sheet, Hiring In-Home Help , is another helpful resource recently updated.

Annual Meeting of Patient-Centered Outcomes Research Institute (PCORI)

PCORI will be holding its annual meeting in Washington, D.C., October 31 to November 2, and patients and caregivers are urged to attend the free event. The three-day gathering, PCORI states, will spotlight results from patient-centered outcomes research studies and explore opportunities to use this evidence in ways that patients and other healthcare stakeholders find most useful. Agenda and registration details are available on the PCORI website .

The Costs of Living With a Pre-Existing Condition

“Health insurance rules my life. It decides my jobs, my aspirations, my retirement plans, and, potentially, my citizenship.” Thus begins former New York Times reporter Kurt Eichenwald’s discussion of the all-consuming effects of his epilepsy, the oppressive impact of pre-ACA pre-existing-condition insurance exclusions, and his rising anxiety over the possibility of losing guaranteed coverage if ACA protections are rolled back. “As Republicans fight to destroy the ACA, the terror of financial wreckage has returned. My wife either has to work until she is 69 or we will have to risk being wiped out if I lose my insurance through my current job. Just my medication—at almost $50,000 a year—would rapidly deplete our savings. That prospect is too much for us to bear. So we are left considering a more dramatic option: leaving the United States for a European country that guarantees coverage. We consulted a lawyer, who is helping me try to gain German citizenship, and my wife, who was born in England, is renewing her British passport. But it angers us that we might be forced to leave our home simply because of this nation’s broken health policies.”

Is It Right to Lie to a Person With Dementia?

“Should the illusions of dementia be corrected or accepted?” In the wake of the distressing projections of the growth of cognitive disorders, New Yorker writer Larissa MacFarquhar has penned a thought-provoking essay exploring the issue of when and whether to correct those illusions. “People with dementia often ask to go home,” she writes. “Some ask even if they’re still in the house they lived in for years; people in institutions can ask many times a day. Telling a person in an institution that they live here now, that this is their permanent home, is usually neither comforting nor convincing. So, to address this problem, many nursing homes and hospitals have installed fake bus stops. When residents ask to go home, a staff member takes them to the bus stop where they sit and wait for a bus that never comes. At some point, when they are tired, and have forgotten what they are doing there, they are persuaded to go back “ MacFarquhar profiles memory care units in the United States and Holland, where such scenarios are playing out most vividly. “In dementia care,” she reports, “everybody lies. Although some nursing homes have strict rules about being truthful, a recent survey found that close to 100% of care staff admitted to lying to patients, as did 70% of doctors. In many places there is no firm policy one way or another, but the rule of thumb among the staff is that compassionate deception is often the wisest course. At the same time, however, lying makes many uncomfortable. To ease this guilt, lying in dementia care has been given euphemistic names, such as ‘therapeutic fibbing,’ or ‘brief reassurances,’ or ‘stepping into their reality.’ The current prevalence of lying is in part a reaction to the opposite approach, which was favored in the middle of the last century. Oddly, at a time when doctors routinely lied to ordinary patients about their diagnosis, experts in dementia care advocated confronting impaired patients with facts and truth. Such a view does remain compelling for some. A few years ago, Graham Stokes, a British expert on dementia care, chaired a study on ethical issues in the field, and included on his panel several people with the disease. All of them said: ‘why do you lie to us when we are at our most vulnerable? Would you wish your relationships with others to be based on deceit? Why do you create fake worlds for people with dementia? Why do you convert care homes to look like clubs or cinemas? ‘For me,’ Stokes says, ‘that was a lightbulb moment. It shouldn’t be about deceiving people. It should be about giving them meaningful lives in the present, rather than trying to keep them in nostalgic themes from the past.’”

Insured and Sick: The Out-of-Pocket Cost Burden

While Kurt Eichenwald movingly described the fear of losing his health insurance, a new survey conducted by the New York Times, the Commonwealth Fund, and the Harvard T. H. Chan School of Public Health makes clear that coverage does not insure against crushing health cost burdens. The nationally representative sample of about 1,500 seriously ill Americans found that even with health insurance, more than one-third of the respondents had spent all or most of her savings while sick. “They are often faced with deductibles and copayments” the New York Times’ Margot Sanger-Katz reports, “treatments their insurance won’t cover; and financial challenges—like lost work—that health insurance alone can’t address. Tristan Berger, 47, who was born with spina bifida, has had 16 reconstructive operations on his feet since age 13. A decade ago, he found himself too disabled to continue working, after a series of falls. His wife has health insurance through her job at Walmart. But last year Berger, who lives in Tucson, said he spent $12,000 on care that was not covered by his health insurance. ‘You sit there every month trying to figure out what bill to pay: do you pay the hospital bill or do you pay the utility bill?’ Dr. Khurram Nasser, an associate professor of medicine at Yale, has adapted a phrase from cancer research, ‘financial toxicity,’ as he realized how many of his cardiac patients were struggling to pay for care and making tough choices like skipping pills or cutting back on food.”

Older Women and Breast Cancer Surgery: Worse Than the Disease?

Reported overuse of intensive end-of-life SNF rehabilitation services (see above) is not the only example of possible overutilization among very elderly patients drawing media attention. In her “The New Old Age” column , New York Times contributor Paula Span questions whether breast cancer surgery is the most appropriate option for such patients. University of California San Francisco researchers, Span reports, studying the results of nearly 6,000 nursing home residents who underwent inpatient breast cancer surgery over a 10 year period, recently found that Medicare data showed these women as a group did not fare well. “The women in the study (average age 82) had high rates of diabetes, arthritis, heart failure, and stroke. They needed considerable help with everyday tasks and well over half were cognitively impaired. Yet the surgeons tended to operate aggressively; though about 11% had a lumpectomy, more than ¼ underwent a mastectomy. In more than 60% of the sample, surgeons also removed underarm lymph nodes, a procedure usually conducted to help determine future treatment, but one that can cause pain and infection, with arm swelling that hampers mobility. In younger and healthier groups breast cancer surgery is considered low risk. But for these women, ‘the surgical treatment for breast cancer may have been worse than the breast cancer itself,’ said Dr. Rita Mukhtar, a breast cancer surgeon and co-author of the study.”

Risks of Excessive Medical Testing and Physician Misunderstanding of Results

Coming at the subject of patient treatment from a different perspective, Dr. Daniel Morgan takes aim in the Washington Post at the use and misuse of medical testing. “The man was 66,” Morgan writes, “when he came to the hospital with a serious skin infection. He had a fever and low blood pressure, as well as a headache. His doctors gave him a brain scan just to be safe. They found a very small bulge in one cranial artery, which probably had nothing to do with his headache or the infection. Nevertheless, doctors ordered an invasive angiogram to get images of his brain blood vessels. This test found no evidence of any blood vessel problems. But the dye injection caused multiple strokes, leading to permanent issues with the man’s speech and memory. Every year,” Morgan observes, “doctors in this country order more than four billion tests. But my research has found that many physicians misunderstand test results or think tests are more accurate than they are. Doctors, especially’ fail to grasp how false positives work, which means they make crucial medical decisions—sometimes life or death calls—based on incorrect assumptions that patients have ailments that they probably don’t. The first problem doctors (and thus, patients) face is a basic misunderstanding of probability. Say that disease X has a prevalence of one in 1,000 and the test to detect it has a false positive rate of 5% (meaning five of every 100 subjects test positive for the ailment even though they don’t really have it). If a patient’s test result comes back positive, what are the chances that he or she actually has the disease? In one study, researchers found that almost half of the doctors surveyed said patients who tested positive had a 95% chance of having disease X. This is radically, catastrophically wrong. Imagine 1,000 people, all with the same chance of having disease X. You already know that just one of them has a disease. But 5% false positive rate means that 50 of the remaining 999 would test positive for it nonetheless. That means 51 people would have positive results, but only one of those would really have the illness. So if your test comes back positive, your true chance of having the disease is actually one out of 51, or 2%—a heck of a lot lower than 95%.”

Remote Patient Monitoring: The Growing IoT Market

Ochsner Health System has become a pioneer in the use of remote patient monitoring, according to a report by Modern Healthcare’s Rachel Z. Arndt. “The remote patient-monitoring systems market,” Arndt observes, “is expected to hit $46 billion in 2020. The theory is that if patients allow their providers to track more data, clinicians can sense something was wrong much easier than they otherwise would. Providers also gain a better understanding of the patient’s health. ‘The standard of care used to be that you come into the office and we get to see you two to four times a year. The information I have about you was thus two to four data points in a year,’ Ochsner’s chief clinical transformation officer Dr. Richard Milani observed. ‘As physicians we were just blind; we just hoped things go well, and sometimes they didn’t. Remote patient monitoring stands to change that, turning ‘hope’ into ‘know.’ For remote monitoring to work, patients must have proper devices, internet-enabled versions of traditional medical devices, like blood type pressure cuffs, glucose meters, and scales. At Ochsner, patients can get hooked up with connected devices at O Bars, tech shops at the health system’s major sites where patients can try out and buy digital tools and get advice on apps.” Meanwhile, at UCLA Health, outcomes have improved as a result of the use of remote monitoring programs for certain chronic diseases and for postoperative patients. A clinical team sets parameters for acceptable measurements, and a vendor manages the devices and monitors the dashboard of information. If there’s a problem, the vendor will alert the clinical team, which could then get in touch with the patient through that program. UCLA has reduced postoperative readmissions for cardiac surgery patients. ‘We believe that it’s a direct impact of the coordination and the patient’s active involvement,’ said Keidre Keeves, UCLA’s director of health IT adoption and engagement. ‘Patients feel like somebody cares about them, somebody is watching what they’re doing. It feels safe to them.’”

Med Students Learn to Listen to Older Adults

82-year-old Elizabeth Shepherd entered a classroom at Weil Cornell Medicine in New York and faced an audience of second-year med students. They were meeting her as part of an anti-ageism program. The encounter, as described by the New York Times’ Paula Span, initially followed a pre-scripted route of students asking questions from a standard assessment tool. But the interaction suddenly took a turn. “After telling her rapt audience that she’d raised a son born out of wedlock in 1964 and had divorced twice, ‘I met a 90-year-old online and had the most wonderful summer with this man. I’m now involved with a 55-year-old, but he’s in Afghanistan at the moment so my sex life is not as active as I’d like.’ The Weil-Cornell program is one of a growing number of efforts, both short-term and semester long, that address a variety of geriatric care misperceptions. Dr. Ronald Adelman, co-chief of geriatrics at Weil, developed the annual program—which includes a theater piece and is required for all second-year students—after he realized that medical students were getting a distorted view of elderly adults. ‘Unfortunately, most education takes place within the hospital. If you’re only seeing the hospitalized elderly, you’re seeing the debilitated, the physically deteriorating, the demented. It’s easy to pick up ageist stereotypes.’ These misperceptions, Span writes, “can influence people’s care. In another classroom down the hall, 88-year-old Marsha Levine, a retired family therapist, was telling students about a gastroenterologist who once dismissed her complaints of fatigue by saying, ‘at your age, you can’t expect to have much energy.’ Then in her 70s, she switched doctors and learned she had a low-grade infection. Most doctors who are not pediatricians, will spend most of their careers working with older people, becoming—to borrow a phrase from Dr. Donovan Maust, a geriatric psychiatrist at the University of Michigan—de facto geriatricians. Last year, there were 7,279 certified geriatricians in the United States, with only about half practicing full time. Supply is rising very modestly, while demand will increase a projected 35% by 2025, according to the American Geriatrics Society. As for the Weil student session, both the star, Ms. Shepherd, and her audience gave the interaction high marks. ‘Her candor and openness were incredible,’ said Jason Harris, 25. ‘An organ is an organ. A patient is who we’ll be dealing with in real life.’ As for Elizabeth Shepherd, ‘When I turned 80, I began to realize this really is different. To know that there are not so many years ahead. To think about how I want to spend the rest of my days. There was a new vulnerability. The session was gift to us, as well as to them. It’s an acknowledgment that we are important and of interest.’”

Rosalinde Gilbert Caregiving Legacy Awards

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The extended deadline for the Rosalinde Gilbert Innovations in Alzheimer’s Disease ‎Caregiving Legacy Awards for 2018 is this Friday, October 26, 5 p.m. (Pacific Time). For more information on the three $20,000 awards in the categories—Creative Expression; Diverse / Multicultural Communities; and Public Policy— visit the information page for directions and link to the online application. Previous applicants are encouraged to apply again. Please share this announcement with any nonprofit or public organizations who are potential candidates for an award.

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

Contributor: Kathleen Kelly (executive director)

Layout: Francesca Pera (communications specialist)

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