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In This Issue: ACA in the crosshairs, again :: remaking renal care :: ‘surprise’ medical bill fix hits snag :: Medicaid work controversy persists :: Medicaid waiver requests under fire :: HHS OIG sounds alarm over nursing home abuse and neglect, and hospice care lapses :: MFP program gains votes of approval :: ‘Jimmo Settlement’ clarification :: HHS plans Quality Summit :: Oregon steps up on paid family leave :: diagnostic errors power malpractice suits :: hospitals not quite there yet on ‘never events’ policy :: more evidence of caregiving’s financial burdens :: doubts about CMS HACRP effectiveness :: inadequate nursing home RN staffing levels :: the impact of SNF quality penalties on black and Latino residents :: caregivers for individuals with ADRD :: AD researchers refocus search for treatment :: a call for overhauled ADL/IADL caregiver measures :: surgeons tackle increased risks in elderly patients :: a vision of telemedicine treatment options :: antibiotic resistance threatens UTI care :: ‘shock therapy’ battles depression :: :: hospitals take patients to claims courts :: end-of-life conversations in legislatures, a Philadelphia suburban supermarket café, and a London ‘departure lounge’

It was 11 p.m. and my 2-year-old patient was sleeping peacefully in her hospital bed, snuggled up with her mother and several stuffed animals. Her bedside heart rate monitor, which glowed a faint yellow in the dark hospital room, was turned to “silent.” “Sorry, I have to take a listen to her heart,” I whispered to her mother. I hated to wake her, but recently, when I had offered to wait to examine a child until after a nap, my attending physician had scolded: “You can’t care about that. If you do, you’ll never examine them. They have to get used to it — they’re in the hospital, after all.” I completed my exam: She seemed stable. The next morning, the girl’s mother mentioned that it had taken another hour for her to fall asleep again. Was there anything that we could do to allow her to sleep through the night? She had a point. Research now shows that sleep disruption isn’t just inconvenient and doesn’t merely affect our moods or increase risk of disease. Disrupted sleep can, in fact, drastically affect how well patients heal from the condition that brought them into the hospital in the first place. If sleep were regarded as a continuous infusion of a medication that helped a patient heal faster, provided them with emotional stability, and ensured they were in the best mind-set to understand the risks and benefits of that care, we would think twice about disrupting it. — Amitha Kalaichandran, M.D.

The lazy days of summer? Not if you’re one of the slew of lawyers waging battle, yet again, over the constitutionality of the Affordable Care Act. Or HHS Secretary Alex Azar and his staff making good on his March speech about overhauling kidney disease care. Or members of Congress and their staffs laboring to fashion a legislative fix for “surprise” medical bills. The list could go on. From the halls of Congress to the think tanks of the nation’s capital and to the research campuses across the country, the summer of 2019 is seeing no let up in the spinning wheels of health policy debate.

Federal ACA Lawsuit Update

The U.S. Circuit Court of Appeals in New Orleans became the latest venue to host an event in a long-running saga driven by the Trump Administration’s and Republican state attorneys generals’ efforts to rid the country of Obamacare. Sparked by a recent lower court repudiation of the law that has eliminated the threat of pre-existing condition insurance exclusions for all Americans and provided new coverage for an estimated 20 million Americans, the appeals court heard arguments pro and con on whether congressional elimination of the individual mandate penalty necessitated invalidation of the entire ACA edifice.

Two observers listened closely to the exchange and offered their prognoses. From Georgetown Law School Prof. Katie Keith : “On the merits, the Fifth Circuit could uphold the ACA, strike down only the mandate, strike down the mandate and other provisions that are deemed inseparable from the mandate, or strike down the entire ACA. The Fifth Circuit could also remand the case back to Judge O’Connor for further proceedings. Even if the Fifth Circuit remands the case, this decision could presumably be appealed to the Supreme Court. As with the District Court’s decision, the parties are likely to request a stay pending an appeal if any parts of the ACA are struck down. As a result, nothing would change immediately until there is a final decision from the Supreme Court (at least on whether it wants to hear the appeal or not).”

From long time ACA chronicler and law professor, Timothy S. Jost : “The case was heard by three judges: Carolyn Dineen King, appointed by Pres. Jimmy Carter; Jennifer Walker Elrod, appointed by Pres. George W. Bush; and Kurt D Englehart, appointed by Pres. Donald Trump. Judge Englehart seemed to think the problem was essentially political and should be left to Congress to determine which provisions were invalidated and will survive. Accusing Congress of not taking responsibility to clean up the mess that would be caused by invalidation of the statute overlooks, however, the responsibility of the judiciary not to create the mess in the first place, as the District Court has done in its sweeping decision. This is one of the reasons why existing law on severability directs courts to invalidate only so much of a law as is necessary when a provision is found to be unconstitutional. Listening to the argument, one may conclude that Judges Englehart and Elrod do not understand the scope of the ACA and the serious trouble that invalidating it in its entirety would cause for the American healthcare system. There seems to be a real possibility, however, that the Fifth Circuit may affirm the lower court’s judgment. It will then again be up to the Supreme Court to sort things out. We should see by the fall whether the questions pressed by the court presage its conclusions.”

(Editor’s note: readers interested in further discussion of the Fifth Circuit’s hearing may peruse the Kaiser Family Foundation’s July issue brief : “Explaining Texas v. U.S.: A Guide to the 5th Circuit Appeal in the Lawsuit Challenging the Affordable Care Act.” In addition, Justice in Aging has produced an issue brief that “looks at the ACA’s vast accomplishments through the lens of low-income older adults and individuals dually eligible for Medicare and Medicaid. Many of the law’s coverage expansions, care coordination improvements, consumer protections, and elder justice in healthcare rights provisions that are not as well-known are nonetheless revolutionary.”)

Trump Administration Plan to Transform Kidney Disease Treatment

Following up on HHS secretary Alex Azar’s impassioned March commitment to the National Kidney Foundation for a new approach to renal disease — emphasizing home dialysis and more available kidney transplant options — Pres. Trump has announced plans, as reported by The New York Times’ Reed Abelson and Katie Thomas, “to issue an executive order directing federal agencies to educate and treat people with early forms of kidney disease, to make kidney transplants easier to get, and to shift the financial incentives for clinics and doctors away from the existing system that relies heavily on dialysis. The goal is to remake how Americans with kidney disease get treated, by aggressively seeking to lower the cost by encouraging in-home dialysis and organ donation. Both options are seen as better treatment for patients in clinic-based dialysis. ‘Dialysis has been a wonderful technology, but it has suffered from little innovation,’ said Dr. John Sedor, a kidney specialist at the Cleveland Clinic. ‘It’s a government run program that has discouraged private investment.’ Officials said they wanted 80% of newly diagnosed people with end-stage kidney disease to be moved from clinic-based dialysis by the year 2025, and to reduce the number of Americans who develop end-stage disease by 25% before 2030. Today, only about 12 percent of Americans get dialysis at home, an amount that lags other countries. The Trump administration wants to encourage living donors by adding reimbursements for lost wages and child care, as a way to double the number of kidneys available for transplant by 2030. ‘We, in the United States, have too much in-center dialysis,’ Secretary Azar said. ‘It is mentally and physically draining on you as an individual.’”

‘Surprise Medical Bills’ Legislation: Disagreements and Incentives

As with such things as true love, à la Shakespeare, the course of lawmaking rarely, if ever, runs smoothly. So it appears to be with one of the few bipartisan Congressional efforts currently underway, namely, finding a “fix” for surprise bills incurred by patients after receiving what they believe to be insured services. “A Congressional plan to tackle surprise medical bills,” write the Wall Street Journal’s Stephanie Armour and Kristina Peterson, “is spurring a furious lobbying campaign and disagreements among Republican lawmakers that could make it difficult to pass the legislation this month. Fault lines have emerged over the Senate proposal, centered on whether hospitals or doctors should take a financial hit and how to settle disputes. Committee chairman Sen. Lamar Alexander backs a plan to protect patients by having the insurers pay the out-of-network doctors a median in-network rate, an amount based on what other doctors in the same geographical area get paid. Insurers and employers that provide coverage like the idea, also known as benchmarking. But hospitals and doctor groups, who also would be paid less, disagree and say it would amount to rate-setting by the federal government. Instead, they say, doctors and insurers should settle price disputes through arbitration. With all that said, one sign the bill is likely to make it to the Senate floor: It includes legislation from Senate Majority Leader Mitch McConnell and Sen. Tim Kaine that would increase the minimum age for purchasing tobacco products to 21 years old, from 18. The bill is aimed at curbing electronic cigarette use, or vaping, among teenagers. Mr. McConnell, who is up for re-election next year in a tobacco-producing state, has said this legislation is one of the Senate’s top priorities.” (Editors’ note: a detailed analysis of the “surprise” bill issue can be found in the Kaiser Family Foundation’s “An Examination of Surprise Medical Bills and Proposals to Protect Consumers from Them.”)

The Other Surprise Bill: Hospital Observation Status

Weighing in on the issue, the Center for Medicare Advocacy has once again called for addressing the matter of surprise skilled nursing facility bills that result from a patient’s transfer from what has been deemed a hospital “observation stay” rather than a three-day admission. One example offered by CMA: “An older woman fell. With a bone sticking out of her leg, she was hospitalized — the first day (when she had surgery) in observation, followed by two days as an inpatient. Lacking a three-day inpatient stay, she had to pay $7,000 for admission to a SNF. Her total SNF bill was more than $18,000. The hospital was paid the inpatient rate for her stay, but Medicare did not pay for her SNF stay because her first day in the hospital was classified as outpatient observation.

Medicaid Work Requirements Return to Court; Two States Attempt to Address Coverage Losses

The contentious issue of state Medicaid work requirements will return to a federal district court, July 23, when Judge James Boasberg, who has already halted such requirements in Kentucky and Arkansas, will consider what to do about New Hampshire’s. His proceedings have been thrown into some doubt in the wake of Gov. Chris Sununu’s abrupt decision to delay implementation of New Hampshire’s work requirement for 120 days. “Many of New Hampshire’s nearly 50,000 Medicaid expansion enrollees,” reports Modern Healthcare’s Harris Meyer, “faced a deadline of July 7 to provide evidence that they met the monthly requirement in June of working, volunteering or attending classes or qualified for an exemption. If they failed to report, they would have one month to fix the issue before losing benefits. The first cut-offs would have occurred on August 1. But nearly 18,000 people either had not reported they had met the community engagement requirement or that they qualified for an exemption, the state Department of Health and Human Services said. Many enrollees remained unaware of the reporting and work requirements despite mailings, phone calls and a door-knocking campaign. Concerns about non-reporting had prompted New Hampshire Democratic lawmakers to pass a bill in May establishing a coverage loss cap and adding more exemptions. New Hampshire is the second state to enact a guardrail against coverage losses resulting from a Medicaid work requirement. In May, Montana enacted a bill requiring a re-evaluation of its new Medicaid work requirement if more than 5% of the 96,000 low-income adults currently enrolled were disenrolled due to noncompliance.”

Arkansas Work Requirement Waiver and Loss of Medicaid Coverage Analyzed

Meanwhile, Arkansas’s first-of-its-kind work requirement waiver came under the withering eyes of Boston researchers in a New England Journal of Medicine analysis of its initial implementation. “Work requirements in Arkansas,” the authors write, “were associated with a significant loss of Medicaid coverage and rise in the percentage of uninsured persons. We found no significant changes in employment associated with the policy, and more than 95% of persons who were targeted by the policy already met the requirement or should have been exempt. Many Medicaid beneficiaries were unaware of the policy or were confused about how to report their status to the state, which suggests that bureaucratic obstacles played a large role in coverage losses under the policy.

Medicaid Waiver Landscape Covered in Three Recent Publications

HHS Office of Inspector General Report on Nursing Home Abuse and Neglect

Nursing home quality of care remains a steady focus of research and concern. In a disturbing report from the HHS Office of Inspector General, the agency “determined that an estimated one in five high-risk hospital ER Medicare claims for treatment provided in calendar year 2016 were the result of potential abuse or neglect, including injury of unknown source, of beneficiaries residing in a SNF. We determined that SNFs failed to report many of these incidents to the Survey Agencies in accordance with applicable federal requirements. We also determined that several Survey Agencies failed to report some findings of substantiated abuse to local law enforcement. Lastly, we determined that CMS does not require all incidents of potential abuse or neglect and related referrals made to law enforcement and other agencies to be recorded and tracked in the Automated Survey Processing Environment Complaints/Incidents Tracking System. Preventing, detecting, and combating elder abuse requires CMS, Survey Agencies, and SNFs to meet their responsibilities.” Responding to the OIG’s findings, the National Consumer Voice for Quality Long-Term Care called for comprehensive CMS action: “For instance, whenever a nursing home fails to report abuse/neglect to the survey agency or law enforcement, the survey agency should assess this violation as seriously endangering or being likely to seriously endanger one or more residents and impose a significant monetary penalty. CMS should also alert the public to the facility’s failure to report on Nursing Home Compare.”

OIG Survey of Medicare-Covered Hospice Reveals Problems in Care

The OIG did not limit its recent oversight to skilled nursing facilities. In its first ever national survey of Medicare-covered hospice care, the agency identified significant vulnerabilities in the Medicare hospice benefit, finding that hospices did not always provide needed services to beneficiaries and sometimes provided poor quality care. “The most common types of deficiencies involve poor care planning, mismanagement of aide services, and inadequate assessments of beneficiaries. In addition to these, hospices had other deficiencies that also posed risks to beneficiaries. These failings — such as improperly vetting staff and inadequate quality control — can jeopardize beneficiaries’ safety and lead to poor care. In addition, one-third of all hospices that provided care to Medicare beneficiaries had complaints filed against them. Over 300 hospices had at least one serious deficiency or at least one substantiated severe complaint in 2016, which we considered to be poor performers. These hospices represent 18 percent of all hospices surveyed nation-wide in 2016.” The response from hospice providers, reports Hospice News’ Jim Parker, was quick to emerge as spokespersons affirmed the value of hospice care. “Extreme patient stories highlighted by the media that are not representative of the care most Americans receive can do more to frighten the public than inform them about the benefits of hospice care. The National Hospice and Palliative Care Organization (NHPCO) continues to stress that outliers in the field do not adequately reflect the vast majority of hospice care provision in the United States,” NHPCO president Edo Banach said in a statement.

‘Money Follows the Person’ Passes in the House

Justice in Aging reports that the House has passed the “Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act (H. R. 3253). The bill, which is now with the Senate, includes a 4.5 year extension of both the expansion of spousal impoverishment protection to Medicaid home and community-based services and the Money Follows the Person (MFP) program. MFP’s impact is assessed in a report from Brandeis University’s Community Living Policy Center: “States with robust Money Follows the Person programs fared better than states without MFP or with minimal MFP programs in terms of reducing institutional populations and expenditures and in rebalancing their LTSS systems. Of particular importance are findings showing declines in nursing home occupancy rates and reductions in the nursing home population expecting never to return to the community. Those skeptical of the impact of MFP have sometimes questioned whether institutions simply find other residents to fill beds vacated by those who transition back to the community, and whether the people targeted for transition really would have remained institutionalized were it not for the services provided under MFP, as opposed to eventually returning to the community without this extra support. The findings on occupancy rates and ‘permanent stay’ residents help to remove those doubts. States spent $450 million in MFP funds in fiscal year 2016, a tiny fraction — only 0.3 percent — of the $167 billion spent on Medicaid LTSS in that year. Yet, as this report argues, the program has an outsize impact not only on the lives of the individuals it serves, but also in measurably shifting LTSS recipients and expenditures away from institutional services and toward services provided in people’s homes and communities. It is a successful program that merits a permanent place in national policy.”

Issue Brief Clarifies Medicare Coverage for Post Acute Skilled Care

The Center for Medicare Advocacy and the John A. Hartford Foundation have issued a comprehensive issue brief to utilizing the provisions of the “Jimmo Settlement” whereby Medicare patients’ post acute benefits are deemed covered based on beneficiaries need for skilled care and not on individuals’ potential for improvement. The Jimmo settlement and court decisions pertain to all Medicare beneficiaries throughout the country and apply regardless of whether an individual is in traditional Medicare or in a Medicare Advantage plan.

HHS Quality Summit to Be Convened

HHS has announced that it will convene a Quality Summit that will bring key industry stakeholders and government leaders together to discuss how current quality programs administered by HHS can be further evaluated, adapted, and ultimately streamlined to deliver a value-based care model focused on improving outcomes for American patients. As Modern Healthcare’s Maria Castellucci reports , “The Summit, is in response to a recent executive order from Pres. Trump calling on federal health agencies to develop a strategy within six months that will align quality measures across Medicare, Medicaid, the Children's Health Insurance Program, the health insurance marketplace, the Military Health System and the Veterans Affairs health system. The summit will be chaired by HHS Deputy Secretary Eric Hargan and Dr. Peter Pronovost, chief clinical transformation officer at University Hospitals in Cleveland and patient-safety expert. HHS will accept nominations for participants until Wednesday July 31, 2019. Nominations should consist of a one-page cover letter summarizing an applicant’s qualifications along with an applicant’s resume or CV. Nominations must be submitted via email to [email protected] with the subject line: “Quality Summit Application.”

Inclusive Paid Family Leave Signed Into Law in Oregon

Some very good news from Oregon: the state has enacted what is being described as the most inclusive paid family and medical leave bill in the nation. It will provide up to 12 weeks of income to someone needing time from work to welcome a new child, care for a serious personal or family illness, or to address a domestic violence situation — with an additional two weeks for pregnancy-related complications. The new law applies to all employees, with job protection for all leave-takers and 100% wage replacement for the lowest-paid workers. Some key features: All employees and employers of 25 or more will make small contributions to the fund; employers will pay 60% of the costs, employees 40%; self-employed individuals and tribal government employers may opt into the program; progressive wage replacement means up to 100% for the lowest paid, with the weekly benefit capped at 120 percent of the state average weekly wage (approximately $1,215); job protection applies to all leave-takers; and the bill has an inclusive definition of family, including “any individual related by blood or affinity whose close association with a covered individual is the equivalent of a family relationship.”

Medical Malpractice Research Points to Diagnostic Errors

Johns Hopkins Medical School researchers have delved into 10 years of medical malpractice claims and concluded, as Modern Healthcare’s Maria Castelucci reports , that “about 34% of them resulting in permanent injury or death to a patient were caused by diagnostic errors. We found that nearly three-fourths of serious misdiagnosis-related harms are attributable to diseases in just three major categories — vascular events, infections, and cancers (the ‘Big Three’). Perhaps more importantly, we found that nearly half of the serious harms from diagnostic error are attributable to one of just 15 disease states (aggregating the top five diseases from each category). Causes were remarkably uniform, with clinical judgment failures responsible in >85% of cases. These results suggest considerable progress could be made toward reducing overall serious misdiagnosis-related harms by improving diagnostic decision-making for a relatively small number of high-risk conditions in just a few clinical settings. Serious harms are disproportionately due to failures in clinical judgment, rather than problems with communication or closing the loop on test results; this suggests it will be necessary to develop systems solutions to solve cognitive problems (e.g. device-based decision-support, simulation to improve medical education, diagnostic performance dashboards, or access to specialists via tele-consultation). Research and quality improvement initiatives should target interventions that improve clinical diagnosis for high-harm diseases in specific practice settings such as stroke in the ED, sepsis in the hospital, and lung cancer in primary care.”

Hospital Performance Lags on ‘Never Events’ Policy

From clinician errors to hospital performance — and the latest report from the Leapfrog Group regarding its “never events” policy: “74.5% of the more than 2,000 hospitals that participated in the 2018 Leapfrog Hospital Survey,” writes Modern Healthcare’s Maria Castellucci, “complied with all nine aspects of the group’s never events policy. Hospital compliance with the standard has hovered at or slightly below 80% since 2014. There are 29 events the National Quality Forum has defined as serious patient-safety errors that should be reported. They are often called never events and include surgery performed on the wrong site or death caused by a medication error. Never events occur rarely, but when they do they are often fatal to the patient. The never events policy outlines nine actions a hospital should take if any of the 29 never events should occur. Some of the nine actions are to waive all costs related to the event; report the error to an external agency; interview the patient and family to gather evidence for a root cause analysis; have a protocol in place to provide support for caregivers involved in never events; and make that protocol known to all caregivers and affiliated clinicians. ‘We have 75% (compliance),’ said Leah Binder, CEO of the Leapfrog Group, ‘so clearly there is a great effort in hospital leadership, but at the same time it’s not enough. We need 100%. That is the goal.’”

GAO Report on Financial Risk Family Caregivers Face

An estimated one in ten Americans per year cared for a parent or spouse for some period of time from 2011 2017, and women were more likely to provide care. Within this vast population, reports the U.S. Government Accountability Office, parental or spousal caregivers could face retirement security challenges in four categories: high health out-of-pocket expenses, reduced workforce participation, lower contributions to retirement accounts, and lower Social Security benefits. The GAO report offers an extensive list of options, broken into benefits and costs analyses, to address these challenges.

Now and Future Opportunity Cost of Lost Work

A related analysis from the Urban Institute looks at the impact of unpaid family caregiving on the likelihood of working, as well as hours worked, and calculates the related cost of foregone earnings in 2013 and 2050. The study, writes Stipica Mudrazija in Health Affairs, finds that “caring for a family member had a substantial adverse impact on the likelihood of working and a more moderate impact on hours worked. The total opportunity cost of lost work was $67 billion in 2013. While prior studies suggest that the economic benefits of family caregiving outweigh the costs of caregivers’ forgone earnings, such costs are nontrivial. Moreover, if the future population size and composition are accounted for, the opportunity costs in 2050 will almost double, reaching $132 billion. Alongside negative health consequences and other burdens of providing unpaid care, this could translate to a growing negative fiscal impact through forgone taxes and potentially larger outlays for social programs. Therefore, future discussions of the role of family caregiving should recognize that this is a finite and increasingly expensive resource. Future policy action could benefit from accounting fully for the costs in addition to the benefits of caregiving, which would help better define the scope and size of programs needed to support caregivers — many of whom struggle to balance their work and caregiving activities.”

Effectiveness of the Hospital Acquired Condition Reduction Program (HACRP)

The past several months have seen increasing debate over the effectiveness and benefits of CMS’ Hospital Readmission Reduction Program. Now comes a study that raises doubts about a companion ACA-induced program, the Hospital Acquired Condition Reduction Program (HACRP) that established penalties to reduce hospital infections and other complications. The program, University of Michigan researchers conclude, “hasn’t made such events less likely or reduced fatalities or repeat hospitalizations. In this national study of the effect of the HACRP penalty on hospital acquired condition rates and other clinical outcomes using a regression discontinuity design, we report three main findings. Firstly, penalization under the program was more likely to occur for large, academic medical centers and hospitals that care for a higher proportion of disadvantaged patients. Secondly, penalization was not associated with a significant change in the rate of hospital acquired conditions. Thirdly, penalization was not associated with a significant overall change in important clinical outcomes, including 30-day readmission and 30-day mortality. While penalization was associated with a reduction in 30-day readmission and 30-day mortality for some subgroups, this finding is most likely to be by chance because the same subgroups did not show a concurrent reduction in hospital acquired condition rates. Penalization was also not associated with any clear pattern of results across different hospital characteristics. Overall, these findings suggest that financial penalties levied against hospitals performing poorly under the CMS’s HACRP have not meaningfully improved patient safety. The CMS should consider redesigning the HACRP to deal with two major design challenges. Firstly, instead of levying all-or-nothing penalties for hospitals performing in the bottom quarter, the CMS should consider graduated penalties for all hospitals with higher than expected rates of hospital conditions. This approach, used in the Hospital Readmission Reduction Program, is more equitable and provides incentives for improvement among a larger range of hospitals. Secondly, to improve equity, the CMS should consider modifying penalty thresholds based on hospitals’ share of disadvantaged patients.”

Non-Compliance in Nursing Home Staffing Levels

Nursing home staffing levels are often lower than what facilities report, which could compromise care quality, according to a new report in Health Affairs by Harvard and Vanderbilt researchers. Using data only recently available from the Long-term Care Facility Staffing Payroll-Based Journal for the one year period of April 2017–March 2018, “We found nursing home staffing to be much lower on weekends — particularly RN staffing in facilities that cared for a higher share of Medicaid residents. Adverse events such as falls and medication errors might be more likely to occur during those understaffed days, regardless of whether the facility has high levels of staffing at other times. For this reason, CMS should leverage the daily payroll data to incorporate staffing variation over time, in addition to average staffing levels, in its calculation of star ratings. One troubling aspect of our findings is that 75 percent of nursing homes were almost never in compliance with what CMS expected their RN staffing level to be, based on residents’ acuity. Still, almost all nursing homes met the federal eight-hour RN staffing requirement for the majority of days. These conflicting results suggest that the eight-hour requirement does little to ensure adequate RN staffing levels needed to care for people who live in nursing homes.”

Higher Chance of Penalties for SNFs With Non-White Residents

Improved quality of care was the goal of CMS’ Value-Based Purchasing Program that went into effect in October 2018. But, University of Massachusetts researchers report, a distressing finding emerges from the initial assessment of the program’s impact. “Nursing homes that serve largely black and Latino patients,” Modern Healthcare’s Maria Castellucci summarizes , “are more likely to receive a penalty from the program than their peers. The results show that nursing homes with more than 50% of residents who are black had a nearly 25% higher chance of being penalized under the CMS program compared to facilities with mostly white patients. At the same time, nursing homes with mostly Hispanic or Latino patients had more than twice the odds of being penalized compared to majority-white nursing homes. Under the program, SNFs can see up to a 1.6% bonus in their Medicare Part A payments or up to a 2% cut. ‘In light of the findings,’ said lead author Jennifer Gaudet Hefele, assistant professor in the UMass gerontology department, ‘the CMS should reconsider the program, especially for nursing homes that are struggling financially. Many nursing homes are cash strapped, so even a small penalty could be devastating. These types of payment policies aren’t effective and, in fact, are hurtful to the providers on the low-end of the spectrum. Quality goes hand in hand with resources, and it’s creating further disadvantage.’ Hefele suggests the CMS change the program so that it’s voluntary; and for nursing homes that don’t opt in, they must work with quality improvement organizations that will help them cultivate best practices. State health agencies could also get involved and encourage knowledge sharing across nursing homes.”

New ACL Profile on Caregivers for Individuals with Alzheimer’s or Related Dementias

Alzheimer’s disease and related dementias (ADRD) continue to command attention as researchers and pharmaceutical enterprises struggle to move on from recent setbacks and refocus their creative energy. The Administration for Community Living has produced a caregiver profile, Caring for Individuals with Alzheimer’s Disease or Related Dementias (ADRD), comparing caregivers who have a care recipient with Alzheimer’s disease or related dementia with caregivers who have a care recipient without ADRD. The profile offers statistical analyses and caregiver demographics on such topics as care recipient characteristics, caregiving intensity, caregiving support, and caregiver self-reported health.

Brain Disorder That Mimics Alzheimer’s May Lead to New Treatment

Yet another avenue of dementia research has recently been opened with the publication of an important paper defining a brain disorder that mimics Alzheimer’s. Limbic-predominant age-related TDP-43 encephalopathy — or LATE for short — (which mainly affects people over 80) manifests very differently in the brain than Alzheimer’s. The telltale signs of Alzheimer’s are tangles of a protein called tau combined with plaques of amyloid-beta, whereas LATE is characterized by the lesser-known protein TDP-43. “This protein builds up and spreads through the amygdala and hippocampus, two parts of the brain that are key to memory,” writes AARP’s Hallie Levine. “‘The finding may help explain why it’s been so difficult to pinpoint drugs that can successfully treat Alzheimer’s,’ notes paper author Dr. Peter Nelson, a neuropathologist at the University of Kentucky. ‘People who actually had LATE, not Alzheimer’s, may have been included in clinical trials and thus may not have responded to treatment. Even more confusing, it’s possible to have LATE and Alzheimer’s at the same time, making it harder to figure out which disease is causing which symptom. While we now have brain imaging tools such as PET scans that allow us to find out if someone has high levels of beta-amyloid, which would indicate Alzheimer’s, there’s no test right now to diagnose LATE.’ For now, the proteins identifying LATE can be found only during an autopsy, and experts say the most important next step is to develop a test that can measure levels of TDP-43 in a living patient. ‘We'll want to be able to measure that during the earlier years of a person’s life, to get a sense of how much TDP-43 they have at baseline and then how much they develop later in life if they start showing signs of dementia,’ explained Keith Fargo, director of scientific programs and outreach at the Alzheimer's Association. The hope is that dementia patients can be offered a cocktail of dementia drugs, similar to the approach with HIV, targeting whatever combination of brain disorders they have.”

AD Research Looks to the Immune System

“A health-care start-up called Partner Therapeutics began last year with a single product,” writes the Washington Post’s Christopher Rowland: “a leukemia medicine approved in 1991 that doctors rarely prescribe anymore. The drug, Leukine, made so little money that its previous owner did not even bother to disclose sales. It just dumped them on revenue reports under ‘other.’ But now researchers in Colorado are testing Leukine’s ability to regulate the immune system as a treatment for Alzheimer’s disease. The possible reinvention of a three-decade-old off-patent drug is among alternative approaches receiving fresh attention in Alzheimer’s research after broad failures by major drug companies. One researcher likens a brain with Alzheimer’s disease to an old car with multiple system failures. Treatment may require cocktails of drugs to treat different aspects. And drugs that influence the brain’s immune cells, called microglia, are attracting renewed attention. Currently Leukine is used to treat radiation poisoning and is being studied for cancer, as well as Parkinson’s disease. In mice with Alzheimer’s disease, the same protein contained in Leukine cleared amyloid debris from the brain while reversing memory loss. The role of the immune system and inflammation in Alzheimer’s disease has been broadly known for years, but recent advances in human genome mapping have made it possible to more precisely target the role of specific genes. A trio of publicly traded California companies — Denali Therapeutics, Alector and INmuneBio — are capitalizing on the approach and being closely watched in the field. Their work raises the possibility that immune system advances in fighting cancer could be duplicated in brain disease. Arnon Rosenthal, Alector’s chief executive, said. ‘People should not lose hope because one approach failed.’ Rosenthal likened microglia to a police force that sometimes goes rogue in the brains of elderly people and not only is unable to stop crime but also starts indiscriminately shooting innocent victims. Excess inflammation and neuron damage are among the catastrophic results in the brain. Drugs that influence how microglia do their job hold great promise for treatment, he said. ‘If we can repair them and re-strengthen them and get them to come back, we can convert a rogue police force to a good and healthy police force.’”

ASA Webinar: Financial Capacity for People Living with Dementia and Their Caregivers

While ADRD research efforts proceed, the costs for people living with dementia and their caregivers pose relentless and ever-growing burdens. The American Society on Aging will address the financial aspects of dementia caregiving in a free webinar on Tuesday, August 6. Registration is available here .

ADL/IADL Measures: Time to Prioritize Review as Applied to Family Caregiving

“Ask doctors, nurses, or social workers what family caregivers do,” United Hospital Fund Senior Fellow and longtime caregiver advocate Carol Levine blogs in Health Affairs, “and the response is likely to be: ‘Help the patient with ADLs (activities of daily living) and IADLs (instrumental activities of daily living).’ Ask family caregivers what they do, and the response is likely to be: ‘Whatever needs to be done.’ Developed more than 50 years ago to measure the course of recovery of someone with a hip fracture or other condition, ADLs and IADLs even then were not designed to describe or measure the help provided by family members. In the 21st century, these measures fail to recognize the difficulty of caregiving in a complex, technologically sophisticated, and highly regulated healthcare system. As a result, family caregiving is still often seen as ‘informal’ care, requiring no special skills and minimal instruction. What is needed now is a fresh look at all these measures; some may need to be updated by changes in wording, but others require a total overhaul. Perhaps, only an entirely new scheme will fully capture the real range of family caregiving tasks. To identify, assess, and support family caregivers, we need to know who they are, what they are doing (or are expected to do), and what instruction and support they need. This should start with a full review of existing measures as well as the construction of a new measure that encompasses the kinds of tasks that current schemes fail to describe. The review should also look at the existing ADL and IADL measures in terms of the complexity, timing, and duration of the tasks. This should be a high priority for the advisory group to be convened by the Department of Health and Human Services under the 2018 Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act.

Addressing Complex Surgery Complications In Older Patients

“People understand that children are different from adults,” Yale surgeon and geriatrician Dr. Ronnie Rosenthal told The New York Times “New Old Age” columnist Paula Span . “It’s taken a surprisingly long time to come around to the realization that older adults are also different.” People over 65 represent roughly 16 percent of the American population, but account for 40 percent of patients undergoing surgery in hospitals — and probably more than half of all surgical procedures. Those proportions are likely to increase as the population ages and more seniors consider surgery, including procedures once deemed too dangerous for them. “Perhaps unsurprisingly,” writes Span, “older surgical patients often fare worse than younger ones. One study reviewing major, non-emergency surgery in 165,600 adults over 65 found that mortality and complications increased with age; hospital stays often lengthened. Patients in their 80s undergoing major surgery for lung, esophageal and pancreatic cancer have substantially higher mortality rates than those aged 65 to 69 according to another study; they’re also more likely to go to nursing homes afterward. Older patients often have chronic health problems, aside from whatever the surgery is supposed to fix, and take long lists of drugs. The hospital itself, where they risk acquiring infections or losing mobility after days in bed, can endanger them. Rosenthal, along with UCLA surgeon Dr. Clifford Ko, are spearheading an ambitious American College of Surgeons effort to improve the surgical care and outcomes experienced by elderly patients. About to be unveiled is the ACS’s geriatric surgery verification program that sets 30 standards hospital should meet to improve results for older patients. Some of the standards, based on published research, relate to staffing or physical changes like “geriatric-friendly” patient rooms. Some involve managing medications, with less reliance on opioids. Participating hospitals will screen older patients for vulnerabilities — including advanced age, cognitive problems, malnutrition and impaired mobility — that put them at higher risk. Some of these risks can be addressed before surgery, through ‘pre-habilitation,’ to help patients gain strength. But many of the standards involve not infrastructure and surgical approaches but communication: ensuring that patients truly grasp their risks and alternatives, and that physicians ascertain patients’ wishes. ‘The goals of a patient who’s 80 might be very different from someone who’s 50,’ Dr. Rosenthal said. ‘They may value a higher quality of life for a shorter amount of time.’”

Telemedicine Technology: A Hopeful and Reassuring View

Internist Fred Pelzman sees great promise in telemedicine technology as he lets his imagination run in a blog post . “I just did my first telemedicine video visit. The concept seems so strange, the idea of carrying out an ‘office visit’ without the patient actually being in the office. Our front desk staff is free to offer patients a scheduled telemedicine visit over video. They load the portal app, and ‘check in’ 15 minutes before the scheduled time. Many folks trying out this technology have commented how important it is to have a professional looking background, and to remember not to stand up if you are doing these visits from home in your PJs (or worse, with no pants at all). The visit then proceeds with the same back and forth we would do at a real office visit, but no taking of vitals, and obviously no physical examination. Clearly, we don’t want to be doing these kinds of visits with really critically sick patients. But when a patient calls with a minor issue, something that up to now we’ve been handling through a patient portal message or telephone call, perhaps the added value of the video interaction may improve the quality of the care we provide, as well as increase the patient satisfaction and the provider satisfaction with handling healthcare in this resource limited environment. I can envision seeing patients who’ve just gone home from the hospital, or were sent home from the ER, who are still too sick to want to come back in, where the paramedics can go check on them in their home, check vitals, listen to their lungs, see how the wound is healing or if the cellulitis is improving, give a nebulizer treatment or a dose of diuretic, or even give the patient a liter of fluid and see whether they perk up. And if things don’t go well, the paramedics are right there to bring them in where more extensive evaluations and treatments can be administered, either in our office or the ER. Someday, as the technology advances, we’ll be able to get in-home vitals on almost every patient. Perhaps people will be able to walk to the corner drugstore and sit down in a kiosk or booth, have a video visit, and have labs drawn at the same time, and then a medication is magically delivered right to the pharmacist a few feet away from them.”

Antibiotic-Resistant UTIs: A Growing Problem

Antibiotic resistance has become a major threat to public health, and, as The New York Times Matt Richtel reports , that threat is now encompassing all too common urinary tract infections. “For generations, urinary tract infections, one of the world’s most common ailments, have been easily and quickly cured with a simple course of antibiotics. But there is growing evidence that the infections, which afflict millions of Americans a year, mostly women, are increasingly resistant to these medicines, turning a once-routine diagnosis into one that is leading to more hospitalizations, graver illnesses and prolonged discomfort from the excruciating burning sensation that the infection brings. The New York City Department of Health has become so concerned about drug-resistant UTIs, as they are widely known, that it introduced a new mobile phone app this month that gives doctors and nurses access to a list of strains of urinary tract infections and which drugs they are resistant to. The department’s research found that a third of uncomplicated urinary tract infections caused by E. coli — the most common type now — were resistant to Bactrim, one of the most widely used drugs, and at least one fifth of them were resistant to five other common treatments. Resistance to antibiotics has become one of the world’s most pressing health issues, spurred by overuse of the drugs in humans and livestock. The World Health Organization, while noting that data on urinary tract infections and drug resistance is scarce, said the fact the infections were so common strongly suggested that increasing resistance would lead to more severe illnesses and fatalities. The solution, researchers and clinicians say, includes a continued push for more judicious use of antibiotics worldwide. But more immediately, a partial solution would be the development of quick, cheap diagnostic tools that would allow an instant urine culture so that a doctor could prescribe the right drug for UTIs.”

Electroconvulsive Therapy Remains Steady for Severe Depression; New Study on Use for Dementia

For those who sat through the gut-wrenching scenes of Jack Nicholson undergoing shock therapy in One Flew Over the Cuckoo’s Nest the fact the doctors are revisiting the procedure for patients with severe depression will no doubt engender some queasiness. Electroconvulsive therapy, its official name, is a brief electrical stimulation of the brain that causes about a minute-long seizure, helping to realign disrupted circuits. “Although the treatment’s most serious potential side effect — memory loss — remains a meaningful risk,” writes the Wall Street Journal’s Sumathi Reddy, “advances in technology and technique have reduced the severity. Experts say ECT is among the most effective treatments for serious depression when medications and talk therapy don’t work. In December, the U.S. Food and Drug Administration reclassified ECT devices as moderate rather than higher risk in patients with conditions such as treatment-resistant major or bipolar depression, catatonia, and people who need a rapid response because their condition is especially severe. A new study will look at whether ECT can be a useful tool in treating symptoms of dementia, such as aggression and agitation, rather than just depression. There is no national data on how often ECT treatments are conducted. Experts say inpatient treatments have declined but outpatient treatments have risen, leaving the overall numbers relatively steady. At Harvard affiliate McLean Hospital, doctors conduct more than 10,000 electroconvulsive therapy treatments a year for patients with depression and other mental-health conditions. Jerrold Rosenbaum, psychiatrist-in-chief at Massachusetts General Hospital, cautions that ECT is best suited for people with severe depression, particularly those with complicated cases, such as elderly patients. ‘The first line has always been either medication or psychotherapy. ECT is reserved further down the algorithm when things have failed or when someone is seriously suicidal.’”

Nonprofit Hospitals Sue Patients for Unpaid Hospital Debt

“Surprise” medical bills are not the only kind of monetary claims causing patients and families distress; there are also the bills that one expects to receive after undergoing hospital or physician care, but whose amount nonetheless overwhelms the capacity to pay. Increasingly, writes the Wall Street Journal’s Stephanie Armour, “When patients can’t pay, many hospitals are suing. Carlos Ortiz underwent tests last year at Mary Washington Hospital in Fredericksburg, Va., for dizziness that later was linked to an inner-ear problem. When the uninsured gardener couldn’t pay his bill of about $15,000, the nonprofit institution took him to court. Nonprofit hospitals — which receive significant tax breaks because of their not-for-profit status — are more likely than for-profit hospitals to garnish the wages of patients, according to a study of Virginia hospitals published in the Journal of the American Medical Association. The study examined hospital lawsuits that resulted in wage garnishment for unpaid bills. In Virginia, where Mary Washington is based, nonprofit hospitals in 2017 filed 20,000 lawsuits against patients for unpaid debt. Rather than turn over unpaid bills to debt collectors, some hospitals, including nonprofit ones, sue directly to seek payments. But they say they do so as a last resort. At Mary Washington, uninsured patients already receive an across-the-board discount of 30%, said Lisa Henry, a spokeswoman for Mary Washington Healthcare. Mary Washington also provides millions of dollars annually in charity care and other community benefits, she said. ‘We go to court because we want to get patients to engage with us,’ Ms. Henry said. ‘We do have to pay our bills as a nonprofit.’ The Affordable Care Act set new requirements for nonprofit hospitals that were largely expected to curb aggressive collection efforts but concerns persist. Congressional and state lawmakers from both political parties say nonprofits hound low-income patients with aggressive collection efforts, even as they enjoy tax-exempt status and their senior executives bring in salaries that rival for-profit organizations. ‘While the majority of hospitals make a good-faith attempt to follow the rules, some have not always done so,’ said Senate Finance Committee Chairman Chuck Grassley. ‘For those that have not, the IRS must conduct a thorough review and determine whether the nonprofit hospital should continue to take advantage of this designation.’”

Aid in Dying Legislation Grows With Less Controversy

By September nine states and the District of Columbia will allow doctors to prescribe lethal medication to terminally ill patients who want to end their lives. But while the campaign for aid in dying continues to make gains, writes The New York Times’ Paula Span, “supporters are increasingly concerned about what happens after these laws are passed. Many, critics say, force the dying to navigate an overly complicated process of requests and waiting periods. And opt-out provisions — which allow doctors to decline to participate and health care systems to forbid their participation — are restricting access even in some places where aid in dying is legal. Still, compared to the national media glare that has followed previous fights over these laws, the movement’s recent victories have generated relatively little furor. ‘We’re nearing a tipping point,’ said Peg Sandeen, executive director of the Death With Dignity National Center. ‘The issue, while still controversial, is less scary.’ Opponents, including Catholic organizations and some disability activists, continue to denounce these laws. And while public opinion polls consistently show broad support for aid in dying, the persistently small number of users suggests that most Americans close to death would not personally choose to self-ingest barbiturates, even if they support legalizing that option. Moreover, a study from Kaiser Permanente Southern California, a health system that supports patients who request and meet requirements for aid in dying, shows that at least a third of those who inquire about it become too ill to complete the process, or die before they can qualify.”

A Call for Better Care or a Well-Reasoned Decision? Discussing ‘Rational Suicide’

While end-of-life discussions and planning have occupied a growing number of legislative debates, other manifestations of increased interest appear on both sides of the Atlantic. Outside Philadelphia 10 residents of a retirement community gather at a nearby supermarket café. Their focus that day, writes Kaiser Health News’ Melissa Bailey: “They aimed to answer a taboo question: When they feel they have lived long enough, how can they carry out their own swift and peaceful death? The seniors, who live in independent apartments at a high-end senior community near Philadelphia, showed no obvious signs of depression. They’re in their 70s and 80s and say they don’t intend to end their lives soon. But they say they want the option to take ‘preemptive action’ before their health declines in their later years, particularly due to dementia. More seniors are weighing the possibility of suicide, experts say, as the baby boomer generation — known for valuing autonomy and self-determination — reaches older age at a time when modern medicine can keep human bodies alive far longer than ever before. The group gathered a few months ago to meet with Dena Davis, a bioethics professor at Lehigh University who defends ‘rational suicide’ — the idea that suicide can be a well-reasoned decision, not a result of emotional or psychological problems. Davis, 72, has been vocal about her desire to end her life rather than experience a slow decline due to dementia, as her mother did. The concept of rational suicide is highly controversial; it runs counter to many societal norms, religious and moral convictions and the efforts of suicide prevention workers who contend that every life is worth saving. ‘The concern that I have at a social level is if we all agree that killing yourself is an acceptable, appropriate way to go, then there becomes a social norm around that, and it becomes easier to do, more common,’ said Dr. Yeates Conwell, a psychiatrist specializing in geriatrics at the University of Rochester and a leading expert in elderly suicide. ‘That's particularly dangerous with older adults because of widespread ageist attitudes. As a society, we have a responsibility to care for people as they age. Promoting rational suicide creates the risk of a sense of obligation for older people to use that method rather than advocate for better care that addresses their concerns in other ways.’ Suicide prevention experts contend that while it’s normal to think about death as we age, suicidal ideation is a sign that people need help. But to Lois, the 86-year-old woman who organized the meeting outside Philadelphia, suicides by older Americans are not all tragedies. Lois, a widow with no children, said she would rather end her own life than deteriorate slowly. But, she admits, supporting rational suicide clashes with the ethos of their continuing care retirement community, where seniors transition from independent apartments to assisted living to a nursing home as they age.”

Opening Up About Death and Quality of Life

Meanwhile, The Departure Lounge in London’s Lewisham Shopping Centre offers lots of supplies for a visitor’s journey: suitcases, travel tips, and guides to answer questions. But booking round-trip passage isn’t on the itinerary, writes Rebecca Voelker in JAMA; “On this voyage, the final destination is death. The Departure Lounge is a U.K. campaign spearheaded by the Academy of Medical Sciences to get people talking about death. Forget euphemisms like passing away, pushing up daisies, kicking the bucket, or in the British vernacular, popping your clogs. This is immersion in a conversation about death, complete with a soundtrack. Designed to appear as a travel agency, the Departure Lounge and its companion website give visitors a lot to think and talk about. Posters suggest ways to start a conversation with family and friends about life’s finale: ask whether they would change how they live if they knew when they were going to die, or whether they’d prefer more time vs. better time at the end. Importantly, ask when they would want medical treatment to end. ‘Maybe, however, we need to reframe the conversation,’ said Joan Teno, M.D., a professor of medicine at Oregon Health & Science University. Teno suggested a broader conversation about the phase of life rather than the more narrow subject of death itself. ‘We need a national conversation about retirement that encompasses how prepared the person is for the next phase and what he or she hopes to accomplish later in life.’ ‘And that type of conversation,’ added Dr. R. Sean Morrison, Icahn School of Medicine at Mount Sinai’s Geriatrics and Palliative chair, ‘differs from person to person depending on their chronic medical conditions. My conversation with a very healthy 65-year-old might be very different from somebody who has severe illness at 65. For those with serious illnesses, the emphasis should be on improving their quality of life. If we do that really well, not only will they have years of better living, but the consequence is that [it] will be a better death as well.’”

Finally, some observations from a new book by Donna Thomson and Zachary White: “When a loved one becomes a caregiver everything changes, including responsibilities, beliefs, hopes, expectations and relationships. Caregiving is always different than we imagine it to be, largely because so few of us think through our care roles in advance. The disorientation associated with these roles can be deep, intense, and isolating because it entails a series of paradoxes, including an ongoing tension that becomes difficult to reconcile: This is a relationship you may not want but feel you must accept. When the people you most want to understand your care roles can’t or don’t, it can feel like a betrayal. When the loved one you are caring for can no longer be an audience for you in the ways they once were (as a spouse, parent or child), you can feel trapped by a desire to share, but painfully reminded that you can’t or don’t know how to disclose what you most want them to know and understand. Relationship confusion is what can happen when care roles ask caregivers to act in ways they feel are inconsistent with preexisting relationships. Talking to a friend the way you once did — filled with references about future vacations and plans — may no longer be possible in ways that make you or your friend comfortable. In the 21st century, caregiving isn’t simply a set of obligations. Rather, it’s a radical re-envisioning of the self-in-action. Care can’t be accomplished in isolation, but only with and through others. Caring for each other occurs within nested dependencies. The outer nest is society, while the innermost is an individual with health needs, or oneself. Giving and receiving flows back and forth between individuals and groups within these layered ‘nests’ of family, community and society. Caring itself is the foundation of our individual and collective well-being, but it cannot thrive without support. Caregiving requires a laser-like focus on the needs of another person. But the aspect of caregiving that others too often forget, but carers know intimately, is that care also requires a radical opening-up to others, a willingness to connect with those you know are in the midst of struggle too. This awareness, born from personal transformation, can be the beginning of a new way of seeing and being ourselves, entwined with the lives of those we love.”

In the 2018-19 fiscal year, FCA translated a selection of current publications into Spanish, Vietnamese, and Chinese, including: Caregiving at Home: A Guide to Community Resources, Transferring a Person, Caregiving and Ambiguous Loss, Assistive Technology, and Understanding Palliative/Supportive Care: What Every Caregiver Should Know, as well as five new tip sheets, including: Could It Be Their Brain? A Frontotemporal Dementia Checklist, Communication (for dementia), Caregiver Depression: A Silent Health Crisis, Hands-On Skills for Caregivers, and When Caregiving Ends. Two of our fact sheets, Caregiving 101: On Being a Caregiver and Caregiver’s Guide to Understanding Dementia, had narration added to them in English, Cantonese, Mandarin, Vietnamese, and Spanish. Our relaxation audio tracks were uploaded onto our YouTube page , for wider access, and partner videos from Home Alone Alliance were added to our website.

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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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