Vol. 20, No. 2
February 24, 2020

Like me, many educated, middle-class women in Generation X, those born from 1965 to 1980, are experiencing a different middle age than our mothers and grandmothers did. As a generation, X is small, a great baby bust, and we are now caring for the far larger generations that tower over us on either side — often while working full-time. Since the 1980s, middle-aged adults have been called the “sandwich generation,” wedged between caring for their parents and raising their kids. But this metaphor feels too innocuous for what Gen X is going through. I find myself drawn to a less friendly analogy: not that of fresh Wonder Bread slices gently squishing us, but that of panini grills pressing us flat. “Take time for yourself,” the women’s magazines say. “Practice self-care.” What they mean is that once a week I should take an hour for highlights or a massage or an exercise class. And I do some of those things. But the only thing I’ve found that actually helps is being in the company of other women, like the one I sat with for that hour in front of the school. Laughing about school admissions, about the cold, about how ridiculous it all is, that’s what we really need — not self-care, but solace.
— Ada Calhoun, The Atlantic

Sometimes I fear American health care has contracted the capitalist equivalent of a condition called Cotard syndrome — the unshakable conviction that you are dead. One of my aunts suffered from it, in fact. “I’m dead,” she announced one day. “Don’t worry, it doesn’t hurt.” The cure for my aunt was antidepressants; the cure for American health care is the kind of universal coverage that virtually every other civilized nation has. Have our health care insurers really been so angelic to us that we cannot possibly imagine something better? We hate our insurance companies. We hate them more than lima beans. We hate them more than spin class. We hate them more than colonoscopies. We hate them more than jellyfish. And yet somehow, the prospect of losing them is the thing that fills us with terror. It would be nice just once if our insurance companies were filled with terror by the prospect of losing us.
Jennifer Finney Boylan, The New York Times , after receiving an unexpected $145,000 bill (subsequently much reduced) for her child’s preapproved hospital stay
  • Thumbs down on Medicaid work requirements
  • House committees inch ahead on surprise medical bills
  • New study documents extent of surprise bill problem
  • CMS opens door to Medicaid ‘block grants’
  • CMS docks hospitals for quality lapses
  • HHS kidney care initiative hits roadblocks
  • CMS says yes to acupuncture
  • Post-acute care aide shortage poses increased patient care challenge
  • PDGM payment implementation upends post-acute therapy incentives
  • Congressional proposal for hospice care legislation
  • RAISE Act Advisory Council meets on the web
Thumbs down on Medicaid work requirements
A unanimous three-judge U.S. appeals court has delivered a resounding rebuke to the Trump administration by affirming a lower court’s invalidation of Medicaid state work requirement waivers requests. Ruling on the Arkansas work requirement measure, the appeals court stated that “The statute and the case law demonstrate that the primary objective of Medicaid is to provide access to medical care. There might be secondary benefits that the government was hoping to incentivize, such as healthier outcomes for beneficiaries or more engagement in their health care, but the means [Congress] has deemed appropriate is providing health care. In sum, the intent of Congress is clear that Medicaid’s objective is to provide health care coverage, and, as a result, the Secretary must give effect to [that] unambiguously expressed intent of Congress. Instead of analyzing whether the demonstration would promote the objective of providing coverage, the Secretary identified three alternative objectives: whether the demonstration as amended was likely to assist in improving health outcomes; whether it would address behavioral and social factors that influence health outcomes; and whether it would incentivize beneficiaries to engage in their own health care and achieve better health outcomes. These three alternative objectives all point to better health outcomes as the objective of Medicaid, but that alternative objective lacks textual support. Indeed, the statute makes no mention of that objective.” In response, reported Modern Healthcare’s Harris Meyer, “CMS said it is reviewing and evaluating the opinion and determining its next steps. ‘CMS remains steadfast in our commitment to considering proposals that would allow states to leverage innovative ideas,’ the agency said in a written statement. Jane Perkins, legal director of the National Health Law Program, which spearheaded the legal challenge to the work requirement waivers, offered praise for the ruling. “It means that thousands of low-income people in Arkansas will maintain their health insurance coverage — coverage that enables them to live, work, and participate as fully as they can in their communities.”
House committees inch ahead on surprise medical bills
It’s happening in fits and starts, but the quest for a surprise medical bill fix has been gathering momentum now that three House panels with relevant jurisdiction have sent forth their legislative proposals. As Kaiser Health News’ Rachana Pradhan reports , “Fixing the problem comes down to settling on a system for deciding how much to pay for a disputed bill. One approach is to set up an outside arbitration process, in which doctors and insurance companies would negotiate payment — this is the model preferred by doctors, who contend it puts them on better footing against insurance companies. Another option would be to resolve surprise billing disputes by having insurance companies pay doctors based on the median in-network rate for the service, an approach known as benchmarking. Large employers, labor unions and insurance companies prefer this.” The current lineup, according to Modern Healthcare’s Rachel Cohrs: “The House Ways & Means Committee has advanced a bill that would ban balance billing using an arbitration process favored by hospitals and specialty physician groups but opposed by insurers, employers and labor unions. The Ways & Means Committee is the last of three House panels with jurisdiction over surprise billing to mark up legislation addressing the issue, which lawmakers are aiming to resolve before a deadline to fund expiring Medicare and Medicaid programs on May 22. The other two House committees and the primary Senate committee responsible for the issue have coalesced around a different approach that blends a benchmark payment rate and a more limited arbitration process. The White House has also voiced skepticism about an arbitration-only approach; spokesman Judd Deere said the Trump Administration ‘is concerned that a push to overuse arbitration will raise healthcare costs.’ At the same time patient advocacy groups have remained neutral so far; AARP and several disease-specific advocacy groups have generally voiced support for protecting consumers, but have not put their weight exclusively behind one proposal.”
New study documents extent of surprise bill problem
Meanwhile, just how extensive the surprise billing problem has become has emerged from a new JAMA study from University of Michigan researchers. The study, reports The Atlantic’s Olga Khazan, “has found that surprise bills might be even more common than previously estimated: they happen about a fifth of the time that a patient has an elective surgery at an in-network hospital with an in-network surgeon. Having a surprise out-of-network bill raised the total bill by an average of $14,083. The dollars racked up while many patients were unconscious, and an out-of-network specialist simply walked into the room. Karen Pollitz, a senior fellow at the Kaiser Family Foundation, told me that though this study highlighted anesthesiologists and surgical assistants, surprise bills can also come from out-of-network pathologists, who analyze tissue and blood samples, or radiologists, who examine X-rays and MRIs. No matter who the surprise bills come from, ‘you don’t pick these people. You don’t know them,’ Pollitz said. ‘You learn their name when the bill comes.’”
CMS opens door to Medicaid ‘block grants’
While it’s morphed into the “Healthy Adult Opportunity” (HAO) initiative, CMS’s new Medicaid offer to states looks a lot like “block grants.” Under the proposed waiver authority, reports Modern Healthcare’s Michael Brady, “All states are eligible to participate in the initiative, which would allow states to extend Medicaid coverage to adults under 65 years old who don't qualify for Medicaid because of disability, long-term care needs or who don’t qualify for a state plan. CMS would allow participating states to change cost-sharing requirements, align benefits and drug formularies with what commercial payers offer, make program changes with less federal oversight and waive retroactive coverage and hospital presumptive eligibility requirements. Under the total expense model, states would have to spend 80% or more of the target amount on health services. If states generate savings without reducing quality or access, the federal government would share the savings with them. But states would have to give up matching federal funds in order to receive cost savings. So most state Medicaid programs would be in a worse financial position than if they went forward with a conventional Medicaid expansion. Red states could see the demonstration as a conservative approach to Medicaid expansion, but the initiative prohibits enrollment caps and partial expansions, two policy tools that many experts think would be important to making capped Medicaid funding work by containing costs.

Seema Verma defends proposal
The proposal’s most ardent advocate, CMS administrator Seema Verma, took to The Washington Post’s op-ed page to defend it. “Fearmongering notwithstanding, HAO does not cut Medicaid funding. This optional demonstration continues federal funding to states based on their historical spending with a reasonable growth rate. The policy finally tackles structural problems in Medicaid that decades of prescriptive regulations have failed to solve and about which governors from both parties have complained. Subject to comprehensive minimum requirements, states would have the ability to make certain program adjustments in real-time without further federal negotiations. That might mean addressing chronic disease through prevention or focusing on treatment for substance-use disorders. There are two final, important points that the prophets of doom consistently fail to convey. First, this is an optional opportunity; no state is required to participate. Second, HAO is available to states for an important but limited population: working-age adults who are not eligible on the basis of a disability and for whom Medicaid coverage is optional — currently about 15 million people. The other 56 million beneficiaries will not be directly affected.”

Public Policy Institute responds with concern
AARP Public Policy Institute senior strategic advisor Linda Flowers begged to differ : “Under current law, states and the federal government share the costs of financing Medicaid, with Medicaid spending responding to changes in enrollment and the cost of medical care. But under the newly released guidance, CMS allows states to bypass that approach in favor of either of two options that would dramatically alter Medicaid financing: an aggregate cap on spending (i.e., a block grant), or a per enrollee cap (per capita cap). States would continue to receive federal matching funds for allowable expenditures up to the amount of their caps. However, baseline caps would be set below what states would normally receive in Medicaid funding and states would be at risk for expenditures in excess of their allotments. A Medicaid funding approach that puts states at risk might seem like a bad deal for states — one they wouldn’t choose. Yet in spite of approaches that would limit funding, states might be tempted to elect the block grant option because it comes with a financial incentive. Under the block grant policy, states that spend below their annual caps and meet certain performance requirements, can share some of the savings with the federal government. This arrangement creates an incentive for states to decrease spending on targeted populations so that they can gain funds for other state-funded programs that may not necessarily serve Medicaid beneficiaries. Meanwhile, although low-income seniors and people with disabilities are not directly subject to these new funding limitations, the chance that they could be negatively impacted will increase over time. That is because funding growth rates — under block grants and per capita caps — are not expected to keep pace with Medicaid spending growth. States will have to find a way to cover any resulting budget shortfalls, which could lead them to restrict access to services or cut optional services — moves that could potentially impact all Medicaid populations. Thus, capped funding threatens to put all Medicaid enrollees in participating states at risk of losing access to needed care and services.” (Readers can find comprehensive analyses of the HAO demonstration in webinar materials presented by Manett Health’s Cindy Mann and a Kaiser Family Foundation issue brief .)
CMS docks hospitals for quality lapses
Not without controversy, reports Kaiser Health News’ Jordan Rau, the sixth annual list of penalties imposed under the Hospital-Acquired Conditions Reduction Program (HAC) contains hundreds of hospitals across the nation, including a number with sterling reputations for cutting edge care, that will be paid less by Medicare after the federal government found that they had higher rates of infections and patient injuries than others. Under the law, Medicare is mandated each year to punish the quarter of general care hospitals that have the highest rates of patient safety issues. The government assesses the rates of infections, blood clots, sepsis cases, bedsores, hip fractures and other complications that occur in hospitals and might have been prevented. Hospitals can be punished even if they have improved from past years. Medicare cuts every payment by 1% for those hospitals over the course of the federal fiscal year, which started in October and runs through the end of September. Since the program’s onset, 1,865 of the nation’s 5,276 hospitals have been penalized for at least one year, according to a Kaiser Health News analysis. This year, Medicare penalized seven of the 21 hospitals on the U.S. News’ Best Hospitals Honor Roll, an annual ranking often used as a proxy for identifying the most prestigious facilities. Leah Binder, president of The Leapfrog Group, a patient safety organization, said the complex formula Medicare uses to allot penalties is too confusing and the penalty set by Congress is too small to be effective. ‘Americans expect 100% of hospitals to go to the ends of the Earth to prevent needless patient suffering, and singling out some hospitals for a little 1% ding isn’t enough.’ Dr. Atul Grover, executive vice president of the Association of American Medical Colleges, said teaching hospitals incurred penalties more often because they often treat some of the sickest people and Medicare’s calculations did not sufficiently take into account the especially weakened condition of their patients, which make them more susceptible to infections. ‘There are still issues with the methodology, surveillance bias, and the inability to fully risk adjust for our institutions that have patients who are sicker and are more likely to have multiple medical problems.’”
HHS kidney care initiative hits roadblocks
First announced in a rousing speech last year by HHS secretary Alex Lazar and reaffirmed by Pres. Trump as recently as his State of the Union speech, the administration’s proposals to boost the number of U.S. kidney patients who undergo dialysis at home and get transplants, has stalled, reports The Washington Post’s Christopher Rowland, “amid resistance from kidney doctors and large dialysis companies whose payments from the Medicare system could be reduced under the plan. Doctors and large dialysis corporations are seeking to remove or reduce proposed financial penalties for underperforming clinics. The new plan was supposed to take effect Jan. 1, but now the timetable is unclear. Kidney Care Partners, an industry group whose members include the two large corporations that dominate the U.S. dialysis business, Fresenius Medical Care and DaVita, said in a letter to CMS that the plan could make patients ‘feel forced’ into undergoing dialysis at home instead of in a clinic. Kidney Care Partners said it amounts to the government ‘telling nephrologists and facilities to have patients use modalities that are either clinically not appropriate for them or that are expressly against their will to use.’ Those industry arguments are off the mark,’ said Adam S. Boehler, until last fall the director of the federal Center for Medicare and Medicaid Innovation and the key architect of the Trump plan. ‘I think it’s just the opposite. When you look at the United States today, we’re just at about 10 percent rates of home dialysis. You’ve got Hong Kong at 85 percent. You have got Guatemala in the 50s. We’re way behind.’ What the Trump administration is doing here is taking a bold stance to push an industry toward change that needs change, because that’s how you’re going to help people.’ Other supporters of the government plan said doctors and clinics are not giving patients enough information and education about home dialysis and transplants under the current system. ‘Their choice is limited unbelievably now’ said Robert Lockridge, an independent nephrologist in Lynchburg, Va., who is a leading proponent of home dialysis. ‘Everybody knows that home therapy is better, but they don’t know how to get there.’ Only about 12 percent of dialysis patients in the United States receive dialysis treatments at home, even though, when kidney doctors are surveyed, most say it would be the choice for them or a family member. Instead, most patients are treated three times a week for three to four hours a session at dialysis centers, a grueling regimen that has changed little in decades. But the kidney care industry was not the only source of objections; a bipartisan group of 74 members of the House of Representatives said that doctors and clinics should be measured differently than proposed and that the plan should take into account patients’ ability and willingness to use home dialysis. The Medicare Payment Advisory Commission, an independent government watchdog, has also expressed reservations about multiple aspects of the payment formula.”
CMS says ‘yes’ to acupuncture
While the kidney care initiative has hit some roadblocks, CMS is moving ahead on another treatment front. Spurred by the national opioid crisis, reports Becker’s Hospital Review’s Ayla Ellison, Medicare will begin covering acupuncture for people with chronic low back pain. Under the decision, Medicare will cover up to 12 acupuncture session in 90 days, as well as an additional eight sessions for patients with chronic back pain who demonstrate improvement. “We are dedicated to increasing access to alternatives to prescription opioids and believe that covering acupuncture for chronic low back pain is in the best interest of Medicare patients,” CMS Principal Deputy Administrator of Operations and Policy Kimberly Brandt said in a news release. “Over-reliance on opioids for people with chronic pain is one of the factors that led to the crisis, so it is vital that we offer a range of treatment options for our beneficiaries.”
Post-acute care aide shortage poses increased patient care challenge
Modern Healthcare’s Harris Meyer paints a distressing narrative and statistical picture of the growing challenge facing post-acute care: an alarming shortage of direct care workers. “Loretto Health & Rehabilitation in Syracuse, N.Y., was struggling with a nearly 65% turnover among certified nursing assistants, home health aides and licensed practical nurses, many of whom faced difficult challenges with transportation, childcare and other issues. That’s a chronic and growing problem for nursing homes, home-care agencies and hospital systems, which rely on these staffers to provide the bulk of hands-on, nonclinical care for patients. Good post-acute and home care are key factors in achieving quality outcomes in value-based care, but research shows that high turnover hurts quality. There’s a broad consensus that raising wages from the median hourly wage of $12.27, or $20,200 annually, to at least $15 an hour is necessary to recruit and retain workers. Fifteen percent of direct care workers have incomes below the federal poverty level, while 44% earn under 200% of poverty. Better compensation isn’t the only issue. Improving supervision, training and career opportunities, and the social status of direct care work are also essential. ‘We haven’t valued this workforce,’ said Robyn Stone, senior vice president of research at LeadingAge, which represents not-for-profit providers of aging services. ‘They aren’t just taking people to the toilet. They are doing more sophisticated work such as observing changes in condition. Better wages can help, but the work environment is the most important ingredient.’ Some long-term care providers aren’t waiting for the government. Loretto has launched a car-buying and credit program, a free diaper bank, a free clinic, a fund to help in financial emergencies and a prenatal-care program. Loretto also subsidizes employees who want to go to school to qualify for a better-paying job such as licensed practical nurse, which pays 50% more than a CNA. The organization over three years has hired more than 450 employees under the program, with an 80% retention rate.
PDGM payment implementation upends post-acute therapy incentives
A little more than one month into implementation of the new PDGM (Patient-Driven Grouping Model) payment system for Medicare home healthcare, concerns about its impact on patient well-being are growing. “The decision came out of the blue,” writes Kaiser Health News’ Judith Graham. “‘Your husband isn’t going to get any better, so we can’t continue services,’ an occupational therapist told Deloise ‘Del’ Holloway in early November. ‘Medicare isn’t going to pay for it.’ The therapist handed Del a notice explaining why the home health agency she represented was terminating care within 48 hours. ‘All teaching complete. No further hands on skilled care. Wife states she knows how to perform exercises.’ That came as a shock. In May 2017, at age 57, Anthony Holloway was diagnosed with ALS (amyotrophic lateral sclerosis). The Frederick, Maryland, man can’t walk, get out of bed or breathe on his own (he’s on a ventilator). He can’t use the toilet, bathe or dress himself. Therapists had been helping Anthony maintain his strength, to the extent possible, for two years. “It’s totally inhumane to do something like this,” Del said. ‘I can’t verbalize how angry it makes you.’ Previously, Medicare’s home health rates reflected the amount of therapy delivered: More visits meant higher payments. Now, therapy isn’t explicitly factored into the PDGM. Instead, payments are based on a patient’s underlying diagnosis, the presence of other complicating medical conditions, the extent to which the patient is impaired, whether he or she is referred for services after a hospitalization or a stay in a rehabilitation center (payments are higher for people discharged from institutions) and the timing of services (payments are higher for the first 30 days and lower thereafter). ‘Agencies now have a stronger financial incentive to serve patients who need short-term therapy after a stay in the hospital or a rehabilitation facility,’ said Kathleen Holt, associate director of the Center for Medicare Advocacy. Also attractive will be patients who need nursing care for complex conditions such as post-surgical wounds. At the same time, there are fewer incentives to serve patients who need extensive physical, occupational and speech therapy. The new system encourages a ‘holistic assessment of patients’ needs, and there’s convincing evidence that home health agencies sometimes provided too much therapy under Medicare’s previous system,’ said Jason Falvey, a postdoctoral research fellow in the geriatrics division at Yale School of Medicine. ‘But the risk now is that too little therapy will be offered.’”

Prompted by the experiences of people like Anthony Holloway, the Center for Medicare Advocacy has published a detailed guide to actions that are available to Medicare beneficiaries facing termination of home health services. And, following up on her PDGM report, KHN’s Graham has also suggested steps to take “if your home healthcare agency ditches you.”
Congressional proposal for hospice care legislation
Concern about hospice care quality has generated a legislative effort to improve it. Representatives Jimmy Panetta and Tom Reed have introduced the Hospice Act (H.R. 5821, Helping Our Senior Population in Comfort Environments), a bipartisan bill to strengthen regulatory oversight of hospice providers. As Hospice News’ Jim Parker reports , “Increasing survey frequency is one of the centerpiece provisions of the bill, in addition to revamping the surveyor training process and making available to the public results of surveys by state agencies, the U.S. Centers for Medicare and Medicaid Services (CMS) and accreditation organizations. Public reporting of survey results would be a significant move. If enacted, the legislation would require CMS to publish such information in a manner that is prominent, easily accessible, readily understandable and searchable. This may be a challenge for the agency, which would have to distill complex and somewhat arcane quality information in a way that would make sense to the public and other stakeholders. The bill will almost certainly be revised as it moves through the legislative process, including committee markups. Hospice organizations will be lobbying for changes that would reduce the potential burden on providers and redesign the bill to focus on bad actors in the hospice space rather than providers at large.”
RAISE Act Advisory Council meets on the web
The RAISE Act’s Family Caregiver Advisory Council has held its second meeting, an online webcast event that focused on fine-tuning the elements that will guide the council’s development of a national caregiving strategy. Ongoing postings of counsel materials, including meeting results, can be accessed at the Administration for Community Living website.
  • FCA launches Best Practice Caregiving
  • Primary physician home care services expand
  • Researchers assess SDOH services
  • ‘Hotspotting’ programs fail hospital readmission random trial
  • Another Alzheimer’s treatment joins long list of duds
  • FDA gives nod to Alzheimer’s insomnia drug
  • ‘Care Ecosystem’ offers hope to dementia patients and caregivers
  • Researchers make case for dementia sufferers’ ‘personhood’
  • Frailty considerations underpin TAVR decisions and diabetes treatment
  • Strength training targets frailty
FCA launches Best Practice Caregiving
Last month​ a new online resource developed for organizations that support family members and friends caring for people living with dementia was launched on the FCA website.  Best Practice Caregiving is a free web-based database that provides organizations a tool to easily compare and select from more than 40 evidence-based programs for dementia caregiving across the U.S.

Best Practice Caregiving is a collaboration between FCA,  Benjamin Rose Institute on Aging, and the The Gerontological Society of America

To learn more about this exciting new resource, visit  bpc.caregiver.org and check out a recording of a webinar featuring leaders from FCA, Benjamin Rose Institute on Aging and The John A. Hartford Foundation.  Click here. Please note that registration is required to view the recording.
Primary physician home care services expand
“Housecalls for homebound patients: has their time come?” Not routinely, reports journalist Larry Beresford, but increasingly. “Physician home visits are a growing trend in healthcare, driven largely by the aging population of the United States. Various programs across the country provide primary care services for homebound seniors, such as the UCSF Housecalls Program. The program is staffed by nine physicians, three nurse practitioners (NPs), two practice coordinators, and two nurse case managers. It covers the entire city of San Francisco, including the notoriously dangerous Tenderloin district. These aren’t your grandpa’s house calls — quick visits to sick neighbors in a small town. Today, home visits are made to the most medically complex and costly patients. Landmark Health, a multidisciplinary medical group in Huntington Beach, Calif., has contracts with 14 health plans in 13 states and covers 100,000 lives under risk sharing. ‘From a metric standpoint,’ said Dr. Michael Le, Landmark’s chief medical officer, we see 30% to 40% reductions in hospital admissions, and high patient satisfaction. For the 5% to 10% of patients who can’t leave their homes, we need to come to them.’ Although most home visits are made by physicians in small, independent practices, some leaders of the movement are located at academic medical centers such as Mount Sinai, Johns Hopkins, or the Cleveland Clinic. ‘The Clinic’s Medical Care at Home program includes 2,000 patients, which it manages with an interdisciplinary team of providers,’ said Ethel Smith, MD. ‘If we can’t get a doctor out on short notice, we can send a paramedic to the home to do vital signs and medication reconciliation and then Skype into the office to talk to a doctor.’ ‘Home-based primary care is quite real — even though it’s still not mainstream,’ said Brent T. Feorene, executive director of the American Academy of Home Care Medicine. ‘These patients are frail, with multiple chronic conditions, polypharmacy, and issues with activities of daily living. Getting into the PCP’s office is really difficult for them. Lightbulbs are going off for health plans, and the payment models are catching up with the care models.’”
Researchers assess SDOH services
In the past two years, write researchers from NYU and Columbia University, “health systems in the U.S. have publicly committed approximately $2.5 billion toward directly addressing social determinants of health such as housing, food security, and job training. From January 1, 2017, to November 30, 2019, we identified 78 unique programs involving 57 health systems that collectively included 917 hospitals. The programs involved at least $2.5 billion of health system funds, of which $1.6 billion in 52 programs was specifically committed to housing-focused interventions. Additional focus areas were employment (28 programs, $1.1 billion), education (14 programs, $476.4 million), food security (25 programs, $294.2 million), social and community context (13 programs, $253.1 million), and transportation (six programs, $32 million). This figure is dwarfed by health systems’ overall community benefit spending, which is estimated to be over $60 billion per year. Nonetheless, it represents a substantial investment.” Unfortunately, what is lacking, the researchers observe, is strong evidence for health outcome improvements from interventions focused on social determinants. “There is,” they conclude, “very little evidence on which to base billions in investment and may partially explain why investments to date have lagged.”
‘Hotspotting’ programs fail hospital readmission random trial
Just how difficult it may be to translate more intensive social services into improved medical care outcomes has emerged from the findings of MIT researchers on the impact of programs that seek to reduce spending and improve healthcare quality among “super-utilizers,” patients with very high use of healthcare services. The “hotspotting” program created by the Camden Coalition of Healthcare Providers has received national attention as a promising super-utilizer intervention and has been expanded to cities around the country. In the months after hospital discharge, a team of nurses, social workers, and community health workers visits enrolled patients to coordinate outpatient care and link them with social services. But the researchers conclusion: “the Camden Core Model had no significant effect on participants’ 180-day readmission rate. Our results suggest that there are challenges for super-utilizer programs aimed at medically and socially complex populations. It is possible that approaches to care management that are designed to connect patients with existing resources are insufficient for these complex cases. The Coalition has continually worked to adapt the model to the needs of its patient population, and both the Coalition and others are exploring models that involve more complete redesigns of care provision.

‘Hotspotting’ proponents react
Blogging in Health Affairs, Kathleen Noonan, one of the Camden Coalition of Healthcare Providers, sought to put the findings into a broader context. “Our original hypothesis was that targeted, short-term care management, care coordination, and hospital care transitions would be sufficient to reduce costs. We focused on dismantling silos between care systems as we helped patients meet the goals they’d set for themselves. We met patients at the bedside, accompanied them to their primary care appointments, navigated them to specialty and behavioral health services, and helped them apply for benefits. While the theoretical approach was sound, the practical realities were challenging. Our teams struggled to find community-based services that could meet the needs of patients with high rates of mental health diagnoses, addiction, homelessness, and incarceration. Most of our patients have lifetimes of trauma in addition to their chronic health conditions, making both physical and emotional healing an essential element of their care — a process that takes years, not months. Improvement in outcomes therefore stalled because primary care, behavioral health, addiction treatment, and housing services weren’t built to provide services to people with such extreme experiences and needs. What’s more, the systems themselves weren’t built for collaboration.” Added Paula Lantz in the Milbank Quarterly: “These much-anticipated findings have been described in the press and on social media as ‘surprising,’ ‘shocking,’ and ‘disappointing.’ We should not be surprised that the social determinants of health create high-need/high-cost patients who do not experience sudden improvements 6-12 months after a case management intervention. It is wishful thinking to expect that addressing chronic, individual social needs years after the onset of disease could quickly translate into improved health and reduced costs. Many super-utilizer interventions claim to be addressing patient ‘social determinants of health’ when they are, at best, identifying and struggling to remedy a subset of patient social risks and needs. The truth is that hot-spotting interventions are primarily cost-containment strategies aimed at individual, very expensive patients. They are not interventions aimed at the macro- and community-level systems and institutions that drive social, political, and economic disadvantage and health inequities.”
Another Alzheimer’s treatment joins long list of duds
Another trial, another dashed hope: Such has been the all too frequent outcome of drug tests looking for an Alzheimer’s disease antidote. As The New York Times’ Gina Kolata reports, “The study aimed to show that Alzheimer’s disease could be stopped if treatment began before symptoms emerged. The participants were the best candidates that scientists could find: still healthy, but with a rare genetic mutation that guaranteed they would develop dementia. For five years, on average, the volunteers received monthly infusions or injections of one of two experimental drugs, along with annual blood tests, brain scans, spinal taps and cognitive tests. Now, the verdict is in: The drugs did nothing to slow or stop cognitive decline in these subjects. The study was small: 52 taking a drug called gantenerumab, made by Roche, and an equal number trying solanezumab, made by Eli Lilly. Most of the subjects had no symptoms; a few were experiencing very mild early symptoms. About 40 family members served as a comparison group, and received no medication. The results are a deep disappointment, scientists said — but not a knockout punch. Few experts want to give up on the hypothesis that amyloid plaques in the brain are intimately involved in Alzheimer’s disease. ‘Still,’ said Dr. Richard Hodes, director of the National Institute on Aging, ‘investigators must begin to look at other drug targets.’ The Alzheimer’s drugs currently in Phase 3 trials — which are meant to show that a drug actually works — are predominantly anti-amyloid drugs. But the early-stage studies are focused on potential new methods for preventing and treating Alzheimer’s. ‘Out of 46 pharmacological trials, 30 have targets other than amyloid,’ Hodes noted. ‘We are well on our way to moving toward these other potential targets.’”
FDA gives nod to Alzheimer’s insomnia drug
One new addition to the very limited Alzheimer’s medicine chest, as reported by The Motley Fool’s Jim Crumly: Merck’s insomnia drug Belsomra (suvorexant) has received an FDA greenlight for treating sleep disruption in patients with mild-to-moderate Alzheimer’s disease. “Disruption of sleep-wake patterns and difficulty sleeping,” writes Crumly, “is common among Alzheimer’s patients, affecting about 40% of the population, and there is emerging evidence that poor sleep may contribute to the development of the disease and impairment of memory function. Physicians use caution in prescribing the most popular sleep drugs such as Sanofi’s Ambien to Alzheimer’s patients because they may contribute to confusion and falls. Belsomra is the first drug to use a different mechanism that operates on the specific part of the brain that helps keep a person awake.”
‘Care Ecosystem’ offers hope to dementia patients and caregivers
In the absence of proven treatment modalities, the front line in the effort to care for Alzheimer’s patients is occupied by their caregivers. One health care organization working to improve the quality of life of Alzheimer’s patients and their caregivers is the Center for Memory and Aging at the University of California San Francisco (UCSF). As part of its “ Care Ecosystem” program, trained “care team navigators” (CTNs) serve as main points of contact to answer questions and concerns from caregiver/patient pairs. And the Center is now working with other health care organizations to set up their own Care Ecosystems. “Launched in 2013,” reports NextAvenue’s George Lorenzo, “the Care Ecosystem program has demonstrated significantly promising results for providing increased levels of important support services for dementia caregivers and patients. The program is doing this with some relatively simple technology by today’s standards: regularly scheduled, personalized phone calls, along with directing caregivers to important web-based services that can help with the challenges and issues they customarily face. The Care Ecosystem takes a team-based approach in which advanced-practice nurses, pharmacists and social workers who have dementia expertise collaborate with care team navigators. These CTNs are unlicensed, but trained, and caregivers are encouraged to call them whenever a question or concern arises related to dementia care. Having a care team navigator as a primary point of contact is unique because in most dementia care support systems, an advanced-practice nurse typically takes on that responsibility. ‘We think,’ says Katherine Possin, UCSF associate professor of neurology, that ‘this care team navigator is both cost efficient and, perhaps, provides better care because the navigator has time to spend on the phone with the patients and families to build rapport, to show empathy and really be a partner with the family as they face the challenges of dementia.’”
Researchers make case for dementia sufferers’ ‘personhood’
Through the tribulations of cognitive disorders, the hope for maintaining one’s sense of personhood remains alive and compelling. So write Irish researchers in their important meta-analysis of research on personhood and dementia care from the perspective of people with dementia themselves. “Our extensive review found that people with dementia are actively engaged in maintaining their sense of self. The results show that relationships were hugely important to participants in this process. Although families are likely to be the mainstay for supporting personhood, formal carers also have a role to play in this regard, through their interactions, exchanges, and deliberations with the person with dementia. Reframing public policy toward a more personhood-oriented provision is not likely to be easy in the face a professional, cultural, and resource barriers, but it is a necessary condition for real change to occur in the lives of people with dementia. Our synthesis reveals that people with dementia understand personhood and can identify its constituent parts. The task now is to ensure that practitioners and policymakers deliver the necessary practical changes to make personhood a reality for more people with dementia.”
Frailty considerations underpin TAVR decisions and diabetes treatment
Frailty in the elderly is in recent news, first in relation to to how it should affect decisions about transcatheter aortic valve replacement (TAVR), and, second as a key factor in older adults’ diabetes care. A multicenter group of investigators, reports Medscape’s Batya Swift Yasgur, “studied more than 36,200 patients 65 years or older who had undergone TAVR to evaluate the ability of three frailty indices — anemia, albumin level, and five-meter walk speed — to predict 30-day and 1-year mortality. They found these indices to be independently associated with mortality at both time points and helpful in risk stratification for mortality, with low albumin the most powerful predictor, even after adjustment for potential confounders. ‘The impact of frailty on patients’ outcomes after TAVR should not be understated and is an important consideration when risk-stratifying patients prior to the procedure,’ wrote lead author Dr. Soroosh Kiani, Emory Medical School cardiac electrophysiology fellow. ‘Patient selection can be a dilemma, especially when weighing factors that are difficult to quantify, like frailty. In the case of older adults, there can be a discrepancy between their numeric age and how robust they are. We know from other studies in other cardiac procedures that patients who are more frail are more vulnerable to poorer outcomes, [so] we wanted to see if this held true among the TAVR population and, if so, what easy-to-quantify metrics we could use to screen these patients for frailty.’”

Meanwhile, from England’s Association of British Clinical Diabetologists comes a detailed position paper on the significance and management of frailty in diabetes patients. “The paper,” writes Medscape’s Peter Russell, points out that “frailty might be present in between 32% and 48% of adults age 65 years and over who had diabetes. Key management areas in that population include glucose regulation, blood pressure management, lipid-lowering agents, chronic kidney disease, avoiding hypoglycemia, and the role of exercise interventions.” Definitionally, the authors offer a somewhat more extensive frailty checklist than the TAVR study’s three items, expanding to include such measures as grip strength and a short physical performance battery assessing balance, gait speed and proximal lower limb strength.
Strength training targets frailty
For all aging seniors, writes The Washington Post’s Amanda Loudin, “strength training is vital in avoiding injuries and staying independent as you age. When an intruder broke into the Rochester, N.Y., home of 82-year-old Willie Murphy a few months ago, he was met with a big surprise. Murphy, a diminutive but powerlifting woman, quickly jumped into action, using her strength to pummel the intruder with a broom and send him running for the door. While older men and women needn’t become powerlifters, athletes like Murphy who lift massive weights, experts say strength training — using weights heavier than you might expect — can be an important component of a healthy future. Beginning about age 30, men and women lose muscle mass at about the rate of 10 percent per decade until about 50, when that loss accelerates to 15 percent per decade, according to research. By the eighth decade, the loss of muscle mass — known as sarcopenia — and strength can be severe, greatly affecting quality of life by increasing the odds of falls and bone breaks that can cascade into other medical problems. Building strength can also help with the ability to stay independent as someone ages. ‘Strength declines rapidly if it’s not maintained,’ says Seth Larsen, a Fort Worth-based primary care physician and certified strength and conditioning coach. ‘Without it, daily activities like picking up a bag of groceries, opening a kitchen cabinet or getting in and out of a chair can become difficult. You might also need to catch yourself from falling, or get yourself off the floor. Resistance training can be part of the antidote, but picking up five-pound dumbbells and doing a few biceps curls won’t get you where you need to be.’ For the best results, experts say a varied, heavier workload is needed. ‘In most cases, what people think of as strength training really isn’t,’ says Chris Nentarz, a Buffalo-based physical therapist. ‘If you want to offset age-related muscle loss, you need to be working at an intensity of 60 percent to 80 percent of your maximum load [meaning the highest amount you can lift]. You can’t recruit your muscles if you aren’t working hard enough.’”
  • Retrospective denials heighten surprise bill burden
  • ‘Cascading’ medical tests threaten patient health
  • Providers and insurers tackle patient loneliness
  • Delirium patient’s physician daughter calls for comprehensive avoidance strategy
  • Hospice patients and caregivers face unmet hands-on care needs
  • Doctors ponder questionable CPR measures
  • Dementia advance directives meet resistance
Retrospective denials heighten surprise bill burden
A postscript to this month’s surprise medical bill discussion: The more than $34,000 in medical bills that contributed to Darla and Andy Markley’s bankruptcy and loss of their home in Beloit, Wisconsin, grew out of what felt like a broken promise. Darla Markley, 53, writes Kaiser Health News’ Lauren Weber, said “her insurer had sent her a letter preapproving her to have a battery of tests at the Mayo Clinic in neighboring Minnesota after she came down with transverse myelitis, a rare, paralyzing illness that had kept her hospitalized for over a month. But after the tests found she also had beriberi, a vitamin deficiency, Anthem Blue Cross and Blue Shield judged that the tests weren’t needed after all and refused to pay — although Markley said she and Mayo had gotten approval. The billing quagmire into which the Markleys fell is often called retrospective denial and is generating attention and anger from patients and providers, as insurers require preapproval — sometimes called ‘prior authorization’ — for a widening array of procedures, drugs and tests. While prior authorization was traditionally required only for expensive, elective or new procedures, such as a hip replacement or bypass surgery, some insurers now require it for even the renewal of some prescription drugs. Those preapprovals are frequently time-limited. While doctors and hospitals chafe at the administrative burden, insurers contend the review is necessary to ferret out waste in a system whose costs are exploding and to ensure physicians are prescribing useful treatments. But patients face an even bigger problem: When insurers revoke their decision to pay after the service is completed, patients are legally on the hook for the bill. Prior authorizations may now include a line or two saying something like: ‘This is not a guarantee of payment.’ This loophole allows insurers to change their minds after the fact — citing treatments as medically unnecessary upon further review, blaming how billing departments charged for the work or claiming the procedure was performed too long after approval was granted. It then refuses to pay. Oftentimes, approval conversations happen primarily between the insurer and the provider — leaving the patient further in the dark when the bill appears. Martha Gaines, director of the Center for Patient Partnerships at the University of Wisconsin Law School, sees firsthand the time and money patients lose fighting such retrospective denials — for coverage they thought they had. ‘How broken can you get?’ she asked. ‘How much more laid bare can it be that our health care insurance system is not about health, nor caring, but just for profit? Typically, there’s no penalty for insurance companies that play games with prior authorizations,’ Gaines said, calling denials and delays integral to their business model. The National Association of Insurance Commissioners has formed a working group to investigate such revocations. But quick fixes are unlikely. Darla Markley, for one, hopes this doesn’t happen to more people. ‘I wish people would understand that they are one illness away from totally losing everything they worked for. I lost it all in a day.’”
‘Cascading’ medical tests threaten patient health
“The pattern,” writes Harvard Medical School Professor Dr. Ishani Ganlguli, “is familiar to many of us, whether as doctors or as patients: A medical test spurs a “cascade” of phone calls, office visits, tests and treatments, each a logical, even inevitable, progression from the one before. In a sense, this is how medical testing is supposed to work. But no test is perfect and every test has trade-offs — including false positives and incidental findings. Some tests we even know to be low-value — meaning they have at best minimal benefit in a given situation. And so the harms from a cascade — such as cost, time, stress, pain from unnecessary biopsies, and overdiagnosis — can outweigh any benefits, especially when the cascade stems from an unexpected finding or when that initial test wasn’t needed in the first place. One of my colleagues no longer remembers what prompted that first CT scan of his patient’s abdomen years ago, but he cannot forget what happened next. The scan showed an unexpected small, ill-defined mass abutting her kidney. A follow-up MRI and then a painful biopsy were just as ambiguous. So surgeons removed the mass — and the kidney with it — only to discover it was a harmless piece of fat. The devastating conclusion: Her remaining kidney failed soon after. With widespread screening (including notoriously low-value, head-to-toe scans) and improvements in technology, laboratory and imaging tests are increasingly likely to pick up small abnormalities that are most often inconsequential. And once that result is there, it is hard to look away. Of course, doctors and patients alike are also swayed by our cognitive biases — like that one time in a thousand when that tiny speck turned out to be cancer and has haunted us ever since. Even though ‘nothing’ cascades are far more common, we may brush these off as happy near-misses. What’s becoming clear is that we need better ways to navigate cascades once they begin — to maximize any upside and minimize the harm. For patients, that means understanding tests come with trade-offs. For doctors, it’s setting expectations about what tests might reveal, framing results for what they are, and working with patients to decide the next steps informed by evidence and patient preferences.”
Providers and insurers tackle patient loneliness
“Do you have someone who loves you and cares for you? Do you have a source of joy in your life? Do you have a sense of peace today?” Since mid-2018, writes Modern Healthcare’s Maria Castellucci, “staff at AdventHealth have asked patients in outpatient settings those three questions in an attempt to identify health needs beyond the physical realm. In response, patients often say that they don’t have anyone who cares for them, or they feel isolated from their community. There is a strong body of research that feeling lonely impacts health and treatment outcomes. A commonly cited finding is that those who are socially isolated have a 50% higher chance of death compared with those who aren’t, likening it to smoking 15 cigarettes a day. Given the clear connection between loneliness and health, some providers and insurers are trying to address loneliness among their patients and members, although it’s unclear what they can do. While the evidence on the impact of loneliness is strong, research on effective solutions is still scarce, so healthcare organizations are largely testing possible solutions without much understanding of what really helps. AdventHealth staff, after asking the three questions during the intake screening process at their outpatient clinics, note in the patient’s medical record if the indicated responses warrant follow-up. The questions can also be asked on an intake form. If they do need follow-up, that triggers a referral to the trained chaplain, who will call the patient. The physician is also alerted to the patient’s responses for consideration during the visit. AdventHealth is investing $5 million annually in the program, which it calls Clinical Mission Integration. There are ‘no hard dollar returns on investment for the health system to offer this service,’ said Terry Shaw, CEO of the system. ‘The ROI for us is a much healthier and a much better prepared workforce to deal with patients.’”
Delirium patient’s physician daughter calls for comprehensive avoidance strategy
Twenty-one years ago Dr. Sharon K. Inouye co-authored a New England Journal of Medicine article proposing a detailed intervention protocol aimed at preventing delirium in hospitalized older patients. The protocol, named the Elder Life Program, consisted of measures targeting cognitive impairment, sleep deprivation, immobility, visual impairment, hearing impairment and dehydration. Dr. Inouye, as she recounts in a new NEJM article, recently had reason to revisit her groundbreaking work. “I walked into the hospital room in the early morning and observed the patient from across the room. The patient was disheveled, sprawled in bed amidst crumpled sheets, mumbling incoherently. His untouched dinner tray was still on his bedside table, along with multiple missed nighttime doses of medications in miniature pill cups. I called his name, and he glanced over, unfocused, without any spark of recognition in his usually intense deep-brown eyes. His hospital care was overseen by a number of specialty teams. At one point, his medication list encompassed more than 20 drugs in various intravenous and oral formulations, many with known psychoactive effects. Ironically, despite the fact that more than 20 physicians had seen the patient, there was not a single consultation to address the failure of his most important organ, the one that most patients prioritize over all others — his brain. As a geriatrician, I have witnessed this scenario of a patient with delirium hundreds of times. This time, however, the patient was my father, who did not recognize me and whose heart was failing. For 15 years before my father’s admission, I had dedicated my career to better understanding delirium, the acute brain failure my father was now experiencing. Despite its importance, delirium remains unrecognized by clinicians in two thirds of cases. Could my father’s delirium have been prevented? I believe so. Indeed, all the precipitating factors were potentially reversible or remediable. Yet I realized that no person working alone — not even a delirium expert — can prevent delirium. It takes an enlightened, coordinated healthcare system with motivated interdisciplinary health care professionals working together to improve care for older adults. Such models do exist. The Hospital Elder Life Program (HELP), which I developed in 1993, has been demonstrated to be both effective and cost-effective, reducing the incidence of delirium by 40%, while also reducing the likelihood of cognitive and functional decline, the incidence of falls, lengths of stay, the rate of institutionalization, and health care costs by $10,000 per patient. Subsequently, many related delirium-prevention models have been developed. Despite their effectiveness and promise, however, these programs have been implemented in only a small proportion of hospitals worldwide. Rather than designating delirium as a ‘never event’ for hospitals, Medicare could offer incentives for the use of proven strategies for preventing it — such as ensuring early mobility, reducing use of bed or chair alarms, minimizing use of psychoactive drugs, and providing adaptations for vision and hearing impairment — in order to motivate change.”
Hospice patients and caregivers face unmet hands-on care needs
“I’m not anti-hospice at all,” said Joy Johnston, who relocated to New Mexico years ago at age 40 to care for her dying mother. “But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.” So begins Kaiser Health News reporter Blake Farmer’s piece about the limitations of hospice home care experienced by devoted family caregivers. “When it comes to where we die, the U.S. has reached a tipping point. Home is now the most common place of death, and a majority of Medicare patients are turning to hospice services to help make that possible. But as the business has grown, so has the burden on families, who are often the ones providing most of the care. Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Hospice care is a lucrative business. It is now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren’t building dedicated hospice units or residences, in general — mostly because such facilities aren’t profitable enough. Like a growing share of hospice patients, Nashville hospice patient Jean McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get a break each day. John McCasland — Jean’s husband of nearly 50 years — is the person in charge at home. ‘I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able,’ John said. But what hospice provided wasn’t enough help. So he has had to drain the couple’s retirement accounts to hire a private caregiver, out-of-pocket. Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce; sidestepping home hospice typically means paying for a pricey nursing home or dying with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid. As researchers in the field look to the future, they are calling for more palliative care, not less — and, at the same time, they are advocating for more support for the spouses, family members and friends tasked with caring for the patient.”
Doctors ponder questionable CPR measures
“A few months ago,” writes The New York Times’ Paula Span, “an ambulance brought a woman in her 90s to the emergency department at Brigham and Women’s Hospital in Boston. Her metastatic breast cancer had entered its final stages, and she had begun home hospice care. The paramedics determined that she was in cardiac arrest, began cardiopulmonary resuscitation and put a breathing tube down her throat. ‘It’s a common scenario,’ said Dr. Kei Ouchi, an emergency physician and researcher at Brigham and Women’s. ‘And it’s not going to have a good outcome.’ Dr. Ouchi’s question: ‘Should CPR even have been started for this patient?’ It’s a question arising with greater frequency as more people live to advanced ages, when the odds of surviving an out-of-hospital cardiac arrest after CPR are grim, and the chances of avoiding significant neurological disability are worse. A recent international survey directed by Belgian physician Dr. Patrick Druwe looked at CPR for adults over 80 who suffered out-of-hospital cardiac arrest. About 600 clinicians — half paramedics and emergency technicians, the rest emergency physicians and nurses — were asked to recall their most recent patient over 80 who had undergone CPR. Did the clinicians fully agree with starting resuscitation? Did they feel sure resuscitation should not have been started? Or were they uncertain? Only two percent of these patients survived long enough to leave the hospital. Yet more than half the health care professionals thought CPR was appropriate in those cases. Only 18.5 percent thought it inappropriate for patients with so-called non-shockable rhythms — whose hearts show electrical activity yet are not pumping at all — survival rates fall sharply. The proportion of cardiac arrests involving non-shockable rhythms increases with age. In this multinational sample, almost 90 percent of the CPR attempts on patients over 80 involved non-shockable rhythms. The researchers also found that more than 40 percent of these cases were ‘unwitnessed,’ meaning that because no one saw the victims’ collapse, rescuers had no information about how long they had been in arrest — a crucial factor when the odds of successful resuscitation diminish by 10 percent with each minute. None of the elderly patients with non-shockable rhythms and unwitnessed arrests survived hospitalization. Yet about 44 percent of the surveyed clinicians thought those attempts, too, were appropriate. Nursing home residents had particularly dire outcomes. ‘As a resuscitation researcher,’ said Duke University cardiologist Dr. Monique Starks, ‘I want to save everybody. But I think we’ve entered this zone where we’re trying to escape ordinary death.’ For now, CPR remains the default for almost everyone, including very sick and frail older patients with poor prognoses. ‘In 20 years,’ predicted Dr. Ouchi, ‘people will say: “Why do we do this?” It makes no sense. First, do no harm.’”
Dementia advance directives meet resistance
“Susan Saron,” writes the Kaiser Health News’ is JoNel Aleccia, “thought she had prepared for a time when she might be subjected to unwanted end-of-life lifesaving measures. Seven years ago, at age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She had started forgetting things, losing focus at the job she’d held for three decades. Then tests revealed the grim diagnosis. So, Saran uprooted herself. She sold her home in 2015 and found what looked like an ideal place: a bucolic retirement community in rural New York whose website promised ‘comprehensive health care for life.’ And now, she’s fighting with that community over her right to determine how she’ll die even though she has made her wishes known in writing. Such a fight could ensnare millions of Americans with dementia in coming years. In 2018, after two brain hemorrhages, Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document that instructs caregivers to withhold hand feeding and fluids at the end of life to avoid the worst ravages of the disease. But when Saran submitted the document to the continuing care retirement community where she had spent more than $500,000 to secure her future, officials there said they could not honor her wishes. The dementia directives published in the past few years are aimed at filling what experts say has been a major gap in advance-care planning: the gradual loss of capacity to make decisions about one’s care. A key question with respect to these directives, however, is whether patients with dementia, or those who fear the disease, can say in advance that they want oral food and fluids stopped at a certain point, a move that would hasten death through dehydration. It is a controversial form of what is known as VSED, voluntarily stopping eating and drinking, a practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, resulting in death within about two weeks. Critics of the dementia directives, however, say they could lead to forced starvation of incapacitated people. The directives, said Dr. James Wright, medical director of three long-term care facilities in Richmond, Va., may be biased, reflecting a society prejudiced against age, disability and cognitive change. As for Susan Saran, she said her situation should be viewed as a cautionary tale. She wishes she’d asked more questions, insisted on answers about exactly how she would die once her dementia progressed. ‘I didn’t realize I was signing away my right to self-determination,’ she said. ‘I am appalled that my future demented self takes precedence over my competent current self.’”
Innovations in Alzheimer’s Caregiving Awards reception at the upcoming Aging in America Conference
The Rosalinde and Arthur Gilbert Foundation, the  Helen Daniels Bader Fund, A Bader Philanthropy, and FCA recently announced the winning organizations of the  12th Innovations in Alzheimer’s Caregiving Awards. Each organization delivers a state-of-the-art program that addresses the needs of caregivers and those they care for with Alzheimer’s disease or a related condition.
Click here to view detailed information on the winning programs.
Representatives of the winning organizations will receive their awards at a reception held during the upcoming  Aging in America Conference in Atlanta, Georgia. The reception will take place on Wednesday, March 25, 6:30 to 8:30 p.m., at the  Hyatt Regency Atlanta in the Courtland Conference Room. The reception is open to the public.
2020 U.S. Census
The 2020 Census survey is just around the corner and FCA is helping to get the word out. It is time for the decennial census — the 10-year population count of all 50 states, the District of Columbia, and five U.S. territories. Beginning mid-March households will start receiving instructions for completing the survey. Everyone needs to be counted to secure federal funding resources and the number of national and local political representatives for the next 10 years. For more information visit 2020census.gov or download the FAQ pdf handout.
FCA TWEETS @CaregiverAlly
A recent study examined care during the last 6 months of patients’ lives, found that patients with #dementia were more likely to receive care that complied with their wishes.
Follow Family Caregiver Alliance / National Center on Caregiving @CaregiverAlly
and Executive Director Kathleen Kelly @KKellyFCA.
Professional Studies
Graduate Studies
Help support FCA/NCC’s continuing advocacy efforts today with a
donation through Network for Good (or by check) by clicking here .
We gratefully thank you for your support!
If you shop on Amazon please consider supporting FCA through AmazonSmile. Amazon will donate to FCA based on your purchase. All you need to do is use the following link when you shop: smile.amazon.com/ch/94-2687079 .
Are You Receiving Connections?

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.

Stay connected with FCA/NCC on social media
101 Montgomery Street, | Suite 2150 | San Francisco, CA 94104
(800) 445-8106 | www.caregiver.org

Editor: Alan K. Kaplan, (attorney and health policy consultant)
Contributor: Kathleen Kelly (executive director)
Layout: Francesca Pera (communications specialist)

Send your feedback and/or questions to [email protected] or [email protected] .
All rights reserved.