Read Caregiving Policy Digest on a webpage.

My final year at medical school began this fall with an unexpected flight home to Colorado. My mother has multiple sclerosis, and my sister, her caregiver for the past three years while I attended school in New Haven, was moving away to start a new job she’d suddenly gotten. There was no one else but me. I postponed my hospital rotation and canceled my board exam. I notified the school registrar, saying I was uncertain of when I could return and resume my studies. Numbers alone cannot capture the costs we’ve incurred: every sleepless night, every missed opportunity, every surge of shame and guilt. Some nights, when I’m away at medical school, my mother calls me to apologize for being sick: She always dreamed of being able to take care of me and my sister, and instead our youth has been devoted to taking care of her. It took me years to feel worthy of pursuing a separate identity for myself. In the face of insurmountable health-care expenses, my family had become numb to the sting of dreams deferred. Yet with each day more uncertain than the last, I focus on carving out a new future for us amid this fragile present.

— Kristina Brown , 4th year medical student

From the AARP Public Policy Institute

Valuing the Invaluable: 2019 Update

In 2017, about 41 million family caregivers in the United States provided an estimated 34 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion. The estimated $470 billion equates to about $1,450 for every person in the United States (325 million people in 2017). So begins the AARP Public Policy Institute’s latest tally of just how much America’s family caregivers are contributing to the well-being of their loved ones and by extension the well-being of the entire American family. Valuing the Invaluable: 2019 Update puts the staggering totals into several contexts: The economic impact of $470 billion is more than the following:

These realities are particularly relevant today because families and family caregivers are changing. More women, traditionally the family caregivers for older adults, have paid jobs. Men, meanwhile, increasingly take on caregiving duties. Smaller families mean fewer siblings to help share the care. High rates of divorce and smaller family sizes, coupled with more working families, means that in the future, older adults with health and functional needs will have fewer potential family members on whom they can rely for everyday help. Key trends include the increasing diversity of family caregivers, the greater complexity of care needs, larger numbers of family caregivers balancing paid work and family caregiving, and high out-of-pocket caregiving expenses. But perhaps above all else, the key mega-trend to understand is this: The availability of family caregivers is unlikely to keep pace with future demand. In just seven years (2026), baby boomers themselves begin to turn 80 years old — when people are most at risk to need LTSS and receive help from others to carry out tasks of daily living. Meanwhile, the U.S. population aged 45-64 (peak caregiving years) will increase by only 1 percent between 2010 and 2030. During the same period, the 80-plus population will increase by a whopping 79 percent. AARP notes that significant progress in addressing caregiver needs has occurred. Since its last attempt in 2015 to quantify them the RAISE and CARE acts have been put in place, paid family leave provisions have gained traction in both public discourse and state law, and assessments of caregiver roles in home and community-based services have advanced. But indicative of the tasks ahead, the AARP report concludes with more than 40 recommendations regarding financing, caregiver assessment, health professional practices, work/family, and research opportunities.

In This Issue: Verma doubles down on Medicaid work requirements while some states seek gentler approach :: Tennessee plunges ahead on Medicaid block grant proposal :: legislators propose SNF quality improvement measure :: SNF chemical restraints prompt new pushback :: what “no harm” really means :: advocacy groups urge parity for traditional Medicare and Medicare Advantage plans :: RAISE Act information website :: NAM initiates the Healthy Longevity Global Grand Challenge :: “To Err is Human” report’s 20th anniversary propels patient safety impact assessments :: ambulatory surgery center quality comes under scrutiny :: pressure injuries challenge hospital management efforts :: sex differences affect dementia diagnoses :: Biogen reboots a discarded Alzheimer’s treatment :: a look at vitamin D and Alzheimer’s :: medication and health behaviors score big against stents and bypass surgery :: Stanford pulls out the stops in its new hospital while outpatient and home-based care encroach on hospital stays :: state health policy academy encourages palliative care options :: the sandwich caregiving generation looms larger :: PHI report on home care workforce :: Trump’s Executive Order Medicare vision: a stealth attack on Medicare? :: Medicare news coverage: missing in action? :: Alzheimer’s patients lose friends :: seniors get more respect in emergency departments :: freestanding inpatient hospice centers face closure :: Dr. Kleinman bares a caring soul and writes a moving caregiving memoir

State Expansion, Work Requirements, and Block Grants

Medicaid News

The National Academy for State Health Policy has published an updated, comprehensive review of recent state actions concerning Medicaid expansion, work requirements, and block grants. Much activity is in anticipation of, or contingent upon, pending court cases in two U.S. Courts of Appeals, one affecting the future of work requirements, the other the future of the entire Affordable Care Act including its Medicaid expansion component. As decisions neared, CMS director Seema Verma offered a no-holds-barred defense of the Administrations support for state efforts to impose work requirements as a condition for receiving Medicaid benefits. “Lyndon Johnson,” Verma told a state Medicaid directors conference, “once said that the aim of public assistance programs is not only to relieve the symptoms of poverty, but to cure it, and above all, prevent it. The father of Medicaid was right: True compassion involves not just paying the bills, but improving our beneficiaries’ quality of life. ... And if we are serious about improving health outcomes, then we must address the social determinants of health and — in the case of our abled bodied adults — help them live happier and healthier lives infused with meaning and purpose, that is, a life that knows the dignity of a job. A Medicaid program that locks people into poverty begins to look less like a safety net and more like a trap. As with any major new program, CMS carefully monitors operational issues that arise during implementation. There’s been a lot of discussion about Arkansas, whose program was only operational for 10 months. While these challenges must be addressed, less than a year does not allow us to distinguish between the operational challenges of implementation, and the long-term effects of the policy itself. Those who prefer the status quo want to prevent states from adhering to any principles of personal responsibility that could help our beneficiaries successfully transition off public assistance and prepare them to use private coverage.”

In the face of the resistance to state-imposed Medicaid work requirements embodied in the litigation underway, some states, reports Kaiser Health News’ Phil Galewitz, have begun to explore offering alternatives to get more enrollees into jobs to lift them out of poverty and off Medicaid assistance. In Montana, about 32,000 of the 95,000 adult enrollees who gained coverage when the state expanded Medicaid in 2016 have received employment services from the state, including 4,200 who received one-on-one employment training services. In August, Louisiana began a pilot program to train Medicaid enrollees for jobs such as a nursing assistant, commercial driver and forklift operator. It expects 50 people to complete the training this year at a community college. More states are expected to follow. Bobbi Stammers, 37, enrolled in Montana’s Medicaid in 2017 said the state’s job training assistance helped her get a nursing degree this year. The program paid thousands of dollars for her education expenses and supplies, including for textbooks and lab fees, and even covered the cost of fixing her car. Two months after getting her degree, Stammers has a job with full benefits as a registered nurse, which means her family no longer needs Medicaid. At the same time, under pressure from the Republican-controlled Pennsylvania legislature to require Medicaid recipients to work as a condition for coverage, state health officials have devised a gentler approach to getting beneficiaries into jobs. Starting early next year, the Pennsylvania Medicaid agency under Democratic Gov. Tom Wolf will ask people when they enroll if they want job training assistance. It will then require its private Medicaid managed-care organizations to connect those who want help to local employment specialists and follow up to make sure they got it. Teresa Miller, the state human services secretary, predicts the strategy will get better results than strict work requirements. Back in Montana, however, despite the success of Montana’s voluntary program, conservative lawmakers earlier this year pushed through legislation requiring that the state apply to the Trump administration for a waiver to mandate that Medicaid enrollees find jobs to keep their coverage, as well as pay monthly premiums based on how long they are on the program. Health policy experts in Montana fear the work requirement will unfairly punish people who fail to report their employment status. ‘We are worried those who are working are going to be subject to some pretty strict reporting requirements in order to maintain their health coverage,’ said Heather O’Loughlin, co-director of research and development at the Montana Budget & Policy Center. ‘We know there will be a loss of coverage, leaving people in a worse position to take care of themselves.’”

Undeterred by legal uncertainties, Tennessee, reports Modern Healthcare’s Michael Brady, has moved to ask CMS’ approval for transformation of its Medicaid system into a block grant program that would cap Federal Medicaid funding in exchange for shared cost savings, making it the first state to seek approval for such a change. “The plan would allow the state to receive a lump sum payment for its Medicaid program — TennCare — from the federal government based on the CMS’ estimate of how much Tennessee would be expected to spend on healthcare in a given year. Under Tennessee’s proposal, the state and federal governments would split any unspent funds from the block grant if the state came under CMS’ cost estimates. The agency currently expects the state to spend $7.9 billion on its Medicaid population. The state would be able to provide additional benefits to its Medicaid beneficiaries without seeking approval from the CMS. But unlike the original plan that debuted in September, the final proposal bars the state from reducing Medicaid benefits. Tennessee initially wanted the CMS to give it the authority to reduce Medicaid benefits, but the state faced blowback from patient advocates who feared that benefit cuts could hurt TennCare’s enrollees.”

Quality Care for Nursing Home Residents Act Introduced

Rep. Janice Schakowsky (D-IL) and Sen. Richard Blumenthal (D-CT) have introduced H.R. 5216 and S.2943 , the Quality Care for Nursing Home Residents Act of 2019. This legislation would address the concern faced by far too many residents every day — the lack of adequate numbers of nursing staff to care for them. The bill, according to the National Consumer Voice for Quality Long Term Care (Consumer Voice) “would require nursing homes to provide at last 4.1 hours of direct care nursing time per resident day. Studies show that 4.1 hours per resident day of care is the minimum staffing necessary to prevent common quality problems. The bill would also expand training requirements and supervision for all nursing staff; create whistleblower and other protections for nursing home personnel and residents; prohibit the use of forced arbitration agreements between residents and any nursing home entity; and develop a standardized protocol for nursing facilities to obtain informed consent for residents for treatment with psychotropic drugs.

Education Campaign Launched to Reduce the Use of Chemical Restraints in Long-Term Care

While lauding the Schakowsky-Blumenthal measure and its emphasis on minimum staffing levels, Consumer Voice has taken aim at another nursing home target. Acting together with the AARP Foundation, the organizations have launched a national consumer education campaign — Avoiding the Use of Chemical Restraints in Long-Term Care — to reduce the misuse of dangerous antipsychotic drugs in residents of long-term care facilities. “Currently in the U.S., nearly 179,000 residents of nursing homes, many with dementia, are given antipsychotic drugs, despite not having a clinical diagnosis warranting their use. Instead, antipsychotic drugs are used to sedate residents, control unwanted behaviors, or for staff convenience. In this population antipsychotic drugs can cause serious medical complications due to greatly increased risks of stroke, heart attack, falls, and even death. In 2005, the Food and Drug Administration issued a ‘black box’ warning, its highest, for use of these drugs for elderly patients with dementia. These drugs are often administered without informed consent of the resident or their legal representative. The new consumer education campaign will raise public awareness about the dangers of antipsychotic drug use, especially for people with dementia; offer strategies and solutions for exercising individual rights and obtaining quality care; and equip consumers and advocates with the tools and knowledge to help them obtain and advocate for good care without use of these drugs.”

When SNF Care Problems Are Rated ‘No Harm’

Just how necessary these initiatives are is underscored by the Elder Justice newsletter published by the Center for Medicare Advocacy and the Long-Term Care Community Coalition. The recent issue highlights “what ‘no harm’ really means for SNF residents” by presenting several examples of serious care deficiencies in five-star rated facilities that were deemed to constitute “no harm.” “The failure to recognize resident pain, suffering, and humiliation when it occurs too often means nursing homes are not being held accountable for violations through financial penalties. In the absence of a financial penalty, nursing homes may have little incentive to correct the underlying causes of resident abuse, neglect, and other forms of harm.”

Growing Disparity Between Medicare Advantage and Traditional Medicare Benefits

With the Medicare open enrollment season in full swing, beneficiaries are encountering a wide array of choices, particularly with regard to Medicare Advantage plans. As noted in an AARP blog post, “There are much talked-about changes to the rules governing Medicare private plans’ so-called ‘supplemental benefits’ — that is, those benefits not normally covered by traditional Medicare (e.g., vision and dental care). These changes could potentially mean that some Medicare Advantage enrollees will be able to access a host of new and important benefits such as in-home support, assistance for family caregivers, or services to address social determinants of health. Meanwhile, policymakers have not yet implemented similar changes to traditional Medicare, which covers two-thirds of all Medicare beneficiaries. Making improvements only to Medicare Advantage widens the difference between the two Medicare options and has led some experts to conclude that it effectively amounts to favoring Medicare’s private plans over the traditional program. For many consumers, Medicare Advantage may well be the best choice, just as for others, traditional Medicare is the right option. Yet, the imbalance between Medicare Advantage and traditional Medicare is certainly something to pay attention to, given recent reports that many Medicare Advantage plans may be prone to billing abuses, earn high profits without clear evidence of providing better care, and may not serve sicker enrollees well. The new changes to Medicare Advantage do lead to worries that consumers could focus too much on potentially limited new benefits and pay less attention to important coverage features such as whether you can keep your doctor, whether you need a referral before seeing a specialist, or how much you will pay out of pocket.

RAISE Family Caregiver Resource and Dissemination Center

The first fruits of the RAISE Act can be found at National Academy for State Health Policy (NASHP)’s website. To assist the work of the recently appointed Family Caregiving Advisory Council, NASHP has created the Caregiver Resource and Dissemination Center, with support from The John A. Hartford Foundation, in order to: develop family caregiving resources for state and federal policymakers and other stakeholders; provide support to the council and its subcommittee members as they craft policy recommendations; convene experts and thought leaders to provide perspectives and expertise to the council; and support states as they develop policies to address family caregiver issues. NASHP has also posted a summary of the Council’s first meeting that was held in late August.

From the National Academy of Medicine

Healthy Longevity Global Grand Challenge

The National Academy of Medicine is undertaking a major effort to address the “grand” challenge of promoting healthy longevity. Writing in the New England Journal of Medicine, NAM Pres. Dr. Victor J. Dzau, along with several colleagues, announced the Hea lthy Longevity Global Grand Challenge, a multiyear, international effort directed at improving the health, productivity, and quality of life for older people. “The initiative aims to confront population aging on two fronts: near-term policy change informed by existing evidence, and catalysis of novel research and innovation. Accordingly, the effort has two components — a comprehensive study led by international experts that will recommend multisectoral actions for societies to take in the next 10 years and a global innovation competition that aims to stimulate breakthrough ideas, research, and technologies that could extend health and well-being into later life. Beyond transformations in policy and practice, solutions will require novel, accessible innovations and technologies. The NAM is therefore simultaneously launching a Healthy Longevity Global Competition — a series of awards and prizes intended to stimulate innovation and transform the field. The competition will unfold in three phases between 2020 and 2025, mobilizing more than $30 million to foster innovations in healthy longevity. In the first phase, approximately 450 Catalyst Awards, worth $50,000 each, will be issued as seed funding to advance ideas originating from any field or combination of fields. In the second phase, Accelerator Awards will provide further funding to projects that have achieved proof of concept and may have promise for commercialization. The competition will culminate with one or more Grand Prizes, awarded for breakthrough achievements with potential for global impact. Combined with declining fertility rates, the rapid growth of the older population is yielding aging societies, in which the old outnumber the young. This demographic transition creates economic, social, political, and health care challenges. Our core societal institutions, including education, health care, work and retirement, the built environment, and our economies, were not designed to support populations with this anticipated age distribution. As older adults leave the workforce and proportionally fewer younger people line up to replace them, economies will lose their equilibrium. Health care systems will struggle to fulfill increasing demands for treatment, hospitalization, and in-home caregiving. Communities will strain to meet needs for housing, social services, and transportation.”

Patient Safety: 20 Years After ‘To Err is Human’ Report

NAM’s announcement comes 20 years after its publication of the landmark report, To Err is Human, a document that initiated the ensuing crusade to improve patient safety (NAM is the successor to the Institute of Medicine, which published the 1999 report). The report’s 20 year anniversary found many commenters assessing the reports impact. The prevailing verdict, as Modern Healthcare’s editor Aurora Aguilar put it , is “not enough has changed.” Healthcare still has a prevalent culture of silence. Front-line workers worried about litigation or job loss cover up mistakes and leaders fail to address medical errors even in a preemptive fashion, almost as if not to jinx their luck. A few months ago, the World Health Organization reported that 40% of patients in primary and outpatient care around the world are harmed by medical errors. Another 10% of patients acquire infections in hospital settings. Few professions require the level of trust that’s necessary for healthcare to run smoothly. Patients must believe that the decisions made by the providers they choose are in their best interest, aren’t wasteful and are prudent. Providers rely on patients to adhere to medication and treatment regimes. Life is too fragile a thing to take chances. And it’s true, to err is human. But to do as little as has been done in 20 years is inexcusable.”

Modern Healthcare’s Harris Meyer adds further substance to the disappointing assessments of patient care improvements by reporting on the deficiencies still inherent in hospital care quality measures and the failure of healthcare CEOs to make safety and quality a top priority. “The continuing safety problems were highlighted by investigative news reports over the past year and a half documenting chronic safety problems leading to patient deaths and injuries at prestigious hospitals such as Baylor St. Luke’s Medical Center, Johns Hopkins All Children’s Hospital, UNC Health Care System, and University of Texas MD Anderson Cancer Center. In some cases, system leaders knew of the problems while they were occurring but did little until details were published in the news reports. No one denies there have been successes in the 20 years since the IOM report was released, particularly following the passage of the Affordable Care Act in 2010. Partly as a result of quality and safety provisions and financial incentives and penalties in the law, the hospital industry reduced hospital-acquired conditions such as adverse drug events, infections and injuries from falls. An ongoing challenge is the widespread shift of care out of the hospital. Protecting patients from errors in settings such as physicians’ offices, ambulatory surgery centers, diagnostic facilities, skilled-nursing facilities, and home health is harder because the safety infrastructure is much less developed than in hospitals. UCSF’s Dr. Robert Wachter said that while much work remains to be done, he sees substantial improvement, especially compared with the chaos and egregious errors he saw 20 years ago. He bases that judgment on observing hospital care for his elderly parents, Murray and Bernice. ‘Now, there’s a reasonably good chance the physician will have washed his hands. Staff will ask the patient’s name and check the bar codes. Prescriptions and lab tests are speedily transmitted digitally. Physicians can read each others’ notes through the EHR. On the other hand,’ he said, ‘when patients get care from multiple specialists or health systems, it seems like the right hand doesn’t know what the left hand is doing. We haven’t nailed that problem at all.’”

Punctuating the very mixed verdict on patient safety 20 years after the NAM (IOM) study, two respected healthcare quality tracking organizations — Leapfrog and the ECRI Institute — have cast doubts on patient safety records in outpatient settings. The organizations’ separate reports found ambulatory surgery centers don’t consistently adhere to safety procedures like hand-hygiene protocols, and outpatient clinics failed to prevent errors, especially diagnostic and medication errors, because they don’t have recommended processes in place. In its report, for example, ECRI found that diagnostic testing errors represented 47% of all patient-safety events reported in outpatient settings over 12 months; the second most common safety event, medication errors, accounted for 27% of total events.

While patient safety balance sheets were proliferating on the To Err is Human milestone, Modern Healthcare’s Maria Castellucci addressed one particular hard-to-budge reality: Although hospitals have succeeded in the last few years in reducing the incidence of most healthcare-acquired conditions tracked by the federal government there is one persistent problem: pressure injuries. “Instead of decreasing, the most recent data from the Agency for Healthcare Research and Quality show they are actually increasing. The preliminary national rate of pressure injuries, previously called pressure sores or ulcers, was 23 per 1,000 discharges in 2017, which represents a 6% increase from 2014 when the national rate was 21.7. That’s compared with other conditions like adverse drug events, which saw a 26% decrease over the same time period, or central line-associated blood stream infections, which saw a 6% drop. But wound-care specialists claim that unlike other hospital-acquired conditions followed by the CMS, not all pressure injuries can be prevented even when all guidelines are followed. Patients admitted to the hospital for long stays are much sicker than a decade ago because of longer life expectancy. Most pressure injuries — painful lesions on the skin that develop due to pressure from lying in bed or being attached to medical devices — occur among patients in intensive-care units who are elderly, frail, have comorbidities and are experiencing organ failure. The severity of their conditions makes pressure injuries impossible to prevent even when the nursing staff does its due diligence, wound-care nurses argue. Preventing pressure injuries is incredibly resource-intensive. Every patient must be given a comprehensive skin assessment regularly to determine if they are at risk of developing a pressure injury throughout their stay. Even if they aren’t at risk initially, the assessments must continue because the sores can develop at any point. For patients who are at risk, a host of interventions are recommended such as rotating the patient in their bed or a chair, applying dressings to bony areas of the body and changing their meals to enhance nutrition. Executive buy-in is key to effectively prevent pressure injuries.”

Early Dementia: Study Shows Women May Be Under-Diagnosed While Men Over-Diagnosed

Doctors, reports USA Today’s Ryan W. Miller, “may be not be diagnosing women as early as men with brain problems associated with early signs of dementia because of how well women typically perform on simple memory tests, according to the study published in the peer-reviewed journal Neurology. Women generally perform better on verbal memory tests, so when these common tests are used to diagnose mild cognitive impairment, women may be under-diagnosed or diagnosed too late while men may be over-diagnosed or diagnosed too early. ‘If women are inaccurately identified as having no problems with memory and thinking skills when they actually have mild cognitive impairment, then treatments are not being started and they and their families are not planning ahead for their care or their financial or legal situations,’ study author Erin E. Sundermann of the University of California, San Diego, said in a statement. ‘For men who are inaccurately diagnosed with mild cognitive impairment, they can be exposed to unneeded medications along with undue stress for them and their families,’ she added. ‘We have often heard that men are more likely to have mild cognitive impairment than women, yet women are at least as likely to have Alzheimer’s,’ said Mary Sano, director of the Alzheimer’s Disease Research at Mount Sinai School of Medicine and not involved in the study. ‘Using one score for both groups will under-diagnose women and over-diagnose men.’”

New Analysis of ‘Failed’ Alzheimer’s Drug

Meanwhile, what had appeared to be another dead end in the dismal history of Alzheimer’s treatment research suddenly reemerged in the form of Biogen’s announcement, reported by the Wall Street Journal’s Joseph Walker, that its controversial drug, aducanumab, had in fact prove efficacious based upon further analysis of trial data. “If approved, Biogen’s drug would be the first to slow cognitive decline in Alzheimer’s patients, a milestone in long-running but largely futile efforts to find a medicine that can treat the memory-robbing disease. But whether regulators will clear the drug for sale, or if insurers will pay for it, is unclear. ‘We expect Biogen will have an uphill climb convincing regulators that the positive signs it sought in its data analysis were anything more than random chance,’ Baird analyst Brian Skorney wrote in a note to clients. ‘The new analysis is based on data collected from patients between December 2018 in March 2019 when Biogen conducted its futility analysis,’ said Samantha Budd Haeberlein, Biogen’s VP of late stage clinical development. The new data showed that patients receiving higher doses of the drug had significant reductions in clinical decline compared with patients receiving a placebo. The reversal brings renewed hope to the hypothesis that has informed much of the recent research and investment into potential Alzheimer’s drugs: that the buildup in the brain of a sticky substance called beta-amyloid plays a pivotal role in the disease. Unfortunately the various drugs developed with that idea in mind have thus far failed.”

Potential Protective Effect of Vitamin D

The Biogen bombshell was not the only recent bit of intriguing news regarding Alzheimer’s. Neurologist Richard Isaacson, director of the Alzheimer’s Prevention Clinic at Weil Cornell Medicine and New York-Presbyterian, had a good word to say about vitamin D. “When you look at epidemiologic data, it does appear that vitamin D potentially has a protective effect when it comes to Alzheimer's disease. Does that mean that vitamin D should be utilized when trying to reduce a person’s risk for Alzheimer's? Well, it depends. If a person's vitamin D level is 25 (nmol/L), 20, or lower, then maybe it makes some practical sense that we should, at a minimum, try to target a vitamin D level above 30. However, an important 2014 study investigating the optimal target level for vitamin D suggests that aiming toward 50 nmol/L may have a better therapeutic effect when it comes to prevention and risk reduction for dementia. What about when it comes to treatment? Should patients who are already diagnosed with Alzheimer’s disease be on vitamin D supplementation? Again, this may not be one-size-fits-all. It could be that we need to consider levels, or that different people with different genes need different therapies. Although more studies are definitely needed, vitamin D is a relatively safe intervention. We need to realize that 800 IU is not a super-high dose. However, various doses and forms of vitamin D have been investigated in other studies, and we really don't have all the answers just yet.

Stents for Stable Coronary Artery Disease Show Little Benefit

Stents and coronary artery bypass surgery are no more effective than intensive drug treatment and better health habits in preventing millions of Americans from heart attacks and death, a large, still unpublished study has found, shedding new light on a major controversy in cardiology. Researchers and doctors, reports the Wall Street Journal’s Betsy McKay, “have fiercely debated for years how best to treat people who have narrowed coronary arteries but aren’t suffering acute symptoms. The standard treatment has been to implant stents — wire mesh tubes that open up clogged arteries — or to perform bypass surgery, redirecting blood around a blockage. Those procedures are performed even though these patients either have no symptoms or feel chest pain only when they climb a few flights of stairs or exert themselves in some other way. The study, released at the American Heart Association’s annual scientific conference, is the largest and among the most rigorous research yet to suggest that while stents and bypass surgery can be lifesaving for people who are having heart attacks, they aren’t necessarily better than cholesterol-lowering drugs and other changes in health habits for most people with chronic, or stable, coronary artery disease, which affects about 9.4 million Americans. The results add to an already heated debate between interventional cardiologists, who conduct stent procedures, and preventive cardiologists, who prescribe cholesterol and blood pressure-lowering drugs and changes in diet and exercise. ‘This shows the safety of not panicking when you see a positive stress test,’ said Jay Giri, a practicing interventional cardiologist and associate director of the Penn Cardiovascular Outcomes, Quality, and Evaluative Research Center at the University of Pennsylvania Perelman School of Medicine. Blockages in coronary arteries that reduce blood flow to the heart, while frightening, don’t generally cause heart attacks, some research shows. They are caused instead more by ruptures in smaller, softer pieces of plaque that aren’t always visible on a scan. ‘Medicines have improved over the past several years and shrink those dangerous small plaques,’ said Steven Nissen, chief academic officer of the Heart and Vascular Institute at the Cleveland Clinic. ‘The reason medical therapy is triumphing is that it’s treating the entire artery. This is a systemic disease, not a local disease. The results show there is no compelling benefit to proceeding with these invasive procedures in people with stable symptoms as opposed to people with a heart attack.’”

Futuristic Stanford Hospital, Outpatient and Home-Based Care Trend, and Promoting Palliative Care

Healthcare Delivery Update

It has become a cliché to say that healthcare delivery in the United States is undergoing unprecedented change as scientific and technological breakthroughs accelerate at an ever-increasing pace. At one end of the spectrum: consider the new Stanford Hospital that has just opened its doors in Palo Alto. The hospital, writes the Wall Street Journal’s Steven Rosenbush, “borrows ideas about user experience from its neighbor down the road, Apple Inc. The goal is to use technology in a way that makes the hospital more hospitable. The $2.1 billion facility with 368 private rooms puts priority on its user interface. Among other upgrades, patients will be able to use an intuitive keypad to choose entertainment options and will have the option to control temperature, lighting and window blinds from their beds. The hospital, designed by Rafael Viñoly Architects, was built in a modular way to accommodate technology upgrades, according to Mr. Viñoly. ‘Behind the user-friendly interface, advanced technologies come together in new ways, with the goal of improving the experience of patients and caregivers,’ according to Eric Yablonka, chief information officer of Stanford Health Care and the affiliated Stanford University School of Medicine.” The result, reports STAT’s Rebecca Robbins “is like a candy shop for a health-tech enthusiast: There’s a fleet of 23 self-driving robots, each about the size of a big office printer, designed to trek through the hallways at 2 miles an hour transporting heavy items like waste, linens, and gift store merchandise. There’s a food-truck-sized machine with 50,000 slots meant to dispense pills into single-dose packets. (It’s connected with distribution and electronic health records systems, a configuration being billed as first in the world.) There are also Apple TVs, and infusion pumps stamped with tracking tags, and screens beaming real-time footage of language translators, and a Google Maps-esque smartphone app to help patients navigate the hospital. Planning for the hospital has been in the works for so long, however, that a few decisions made half a decade ago now feel a bit outdated. For instance, the building has 34,000 data connections. (Think of those ports in the wall where you plug in an ethernet cable.) That’s a huge number, and it reflects a decision made before wireless tech had fully taken off. Christian Lindmark, the technology chief for Stanford’s health system, acknowledged that, in retrospect, maybe they overdid it with all those ports. But he stands by the decision, noting that it would have been extraordinarily costly if they’d lowballed the figure and then had to install more. The Stanford health system says there will be no changes in its cost model as it transitions from its old hospital to the newly opened one.”

There is one big confounding factor however, as the futuristic Stanford Hospital goes online: the future of healthcare delivery is looking more and more like outpatient- and home-based care. Thus, across the country in Pittsburgh, reports Modern Healthcare’s Shelby Livingston, “When a patient turns up in the emergency department at one of Allegheny Health Network's hospitals with uncomplicated pneumonia, a bacterial skin infection or another lower-risk ailment, that patient may now get the choice to skip the hospital bed and go home to receive care. Highmark Health, the parent company of Pittsburgh-based Blues insurer Highmark and integrated system Allegheny Health Network, is introducing a program to deliver inpatient hospital care to patients in their homes, where it says certain healthcare services can be provided in a safer, lower cost way through a combination of in-person home visits and telehealth. Danville, Pennsylvania-based Geisinger executives have reported that with the hospital’s Geisinger at Home program they’ve seen a 35% decrease in ED visits, 40% decrease in hospital admissions, and an average annual reduction in spending per patient of almost $8,000 for more than 5,000 patients enrolled in the program. The program involves delivering acute care, wound care, regular home assessments and specialty care to medically complex patients where they live.”

Into this evolving mix of delivery options, the National Academy for State Health Policy (NASHP) has added some additional considerations dealing with the provision of palliative care. “State policymakers are increasingly interested in palliative care and its potential to improve the quality of life of individuals with serious and chronic illnesses, while also reducing unnecessary hospital utilization and cost of care. Palliative care services are delivered alongside curative treatment and can include pain and symptom management, care coordination, and team-based, multi-disciplinary support. These services help patients and families cope with the symptoms and stressors of disease, better anticipate and avoid crises, and reduce unnecessary and/or unwanted care. While this model is grounded in evidence that demonstrates improved quality of life, better outcomes, and reduced cost for patients, fewer than 5 percent of individuals who could benefit from palliative care receive it.” To promote palliative care services, the Academy offers areas of opportunity for states to explore, including public education, the use of state regulations to distinguish palliative and hospice care, the development of practice standards in licensing and payment provisions, capacity building measures, and the development of sustainable reimbursement.”

Gen X Caregivers: ‘Sandwiched’

More than 11 million Americans are caring for an adult family member due to health needs or disability, while also caring for children at home. That fact highlights the significance of a new report from the National Alliance for Caregiving and Caring Across Generations. Burning the Candle at Both Ends: Sandwich Generation Caregiving in the U.S. “Families are squeezed, and they need help to balance work and home life,” said C. Grace Whiting, J.D., President/CEO of the National Alliance for Caregiving. “National conversations are heating up on paid family and medical leave, universal childcare, and the need to expand long-term services and supports. Now is the time to invest in workplace flexibility and a robust national infrastructure that can support and augment care for the friends and family who need our care.” Key findings of the report include: sandwich caregivers spent an average of 22 hours a week caring for someone, while often simultaneously juggling work; roughly one-third of sandwich caregivers reported emotional stress, and one in five indicate a high level of financial and physical strain; sandwich caregivers most commonly help with transportation (80%), housework (76%), and preparing meals (62%); very few feel prepared to do the medical/nursing tasks (19%). “So many of us are already dealing with the dual stresses of Sandwich Generation caregiving, and it will only get worse if we don’t receive the support that we need,” said Josephine Kalipeni, Policy Director of Caring Across Generations. “Caregiving doesn’t have to be unsupported or isolating. Lawmakers have the opportunity now to make real change for our nation’s caregivers. Together, we can build a holistic system that acknowledges our varied caregiving needs, across cultural and socioeconomic backgrounds, and that makes care supports accessible, affordable, and flexible for 21st-century families.”

New PHI Report on Home Care Workforce Status and Future Vision

Direct care advocacy organization PHI has published a lengthy report concerning ways of strengthening the home care workforce and maximizing its role within the long-term services and supports system. “More than 15 million Americans living at home experience some degree of difficulty with daily activities due to physical, cognitive, developmental, behavioral, and/or chronic health concerns. The majority of these individuals seek assistance, when needed, from unpaid family members and friends. However, paid home care services fill a critical gap, especially for individuals with limited caregiving networks or with more complex needs. As the U.S. population lives longer and grows older, more individuals will require support to continue living independently in their homes and communities — and yet the home care sector, as the central pillar of the home and community-based services system, is already struggling to meet current demand.”

Responses to the Recent Executive Order ‘Protecting and Improving Medicare for Our Nation’s Seniors’

On October 3 President Trump issued an “Executive Order on Protecting and Improving Medicare for Our Nation’s Seniors” (EO) (Caregiving Policy Digest, October 2019). For many in the Medicare beneficiary advocacy community, the document contained a number of disturbing elements. “Provisions of the EO,” argued the Center for Medicare Advocacy, “would exacerbate an existing imbalance between traditional Medicare and the Medicare Advantage program and demonstrate the administration’s ongoing efforts to maximize enrollment and the scope of coverage in MA plans. It also,” CMA feared, “would promote high deductible Medicare medical savings accounts, erode provider network advocacy, and open the door to extensive private Medicare contracting.” Los Angeles Times columnist Michael Hiltzik went notably further . “Here’s the truth of the matter: Trump’s executive order is a stealth attack on the very program he’s swearing to protect. At the same time, Trump is proposing to turn more of the program over to commercial insurers. Put simply, he’s proposing to privatize Medicare. First is a mandate that the secretary of Health and Human Services examine raising traditional Medicare reimbursements to “more closely reflect the prices paid for services in [Medicare Advantage] and the commercial insurance market.” This would completely destroy the chief advantage Medicare has over commercial insurance — its cost structure. Medicare pays physicians on average about 40% less than commercial plans. Hospitals receive half to two-thirds from Medicare what they do from the private insurers. That brings us to the second shiv into Medicare buried in the executive order. That’s the promotion of Medicare Advantage plans. These plans are essentially privatized versions of traditional Medicare. In traditional Medicare, the government sets reimbursement rates and coverage limitations and provides the program’s administration. Under Medicare Advantage, private insurers receive a set fee per enrollee from the government, but they can offer more services, such as vision and dental coverage, and a host of other come-ons to lure customers, such as acupuncture, health club discounts, transportation to the grocery store, even home pest control. But there are drawbacks. Medicare Advantage plans impose narrow networks of doctors and hospitals on enrollees, and often don’t cover medical expenses while traveling. Most important, they’ve been accused of ripping off the government by charging well more than they should. A 2016 report by the Government Accountability Office placed the excess at $14.1 billion in 2013 alone. Enrollees like Medicare Advantage, which now covers more than a third of all people eligible for Medicare. But that statistic should be approached carefully. ‘For some beneficiaries, it may be the most practical choice — at least while they are relatively young and healthy, says the National Committee to Preserve Social Security and Medicare. But others, such as Nancy Altman of Social Security Works, see it as stealth privatization intended to undermine traditional Medicare.’”

It fell to healthcare journalist Trudy Lieberman to raise some alarm bells , not about the critiques of the Administration’s EO, but the fact that so few media stories reported on the ramifications of the move. “There was scant analysis of what the order would do and how it will impact those now on Medicare and those yet to come. The press, for the most part, was AWOL. That’s despite the fact that the changes would affect the kind of coverage beneficiaries would get now and in the future. Medicare reporting, once a staple of health care journalism, has disappeared from the health and political beats, leaving the public to get its Medicare news via advocacy group press releases and sponsored content or ‘submitted news,’ once known as advertising. To explore this knowledge deficit further, I rang up Julie Rovner, chief Washington correspondent for Kaiser Health News. Rovner, who has covered Medicare for decades, noted the paucity of Medicare coverage. She observed that while the program ‘seems to have taken a backseat to sexier issues, a lot of those issues end up circling back to Medicare. Years ago, if you were a Washington reporter you covered Medicare because it was the big kahuna and Congress did a lot of legislating on Medicare. You became a Medicare expert because that was pretty much all there was to cover. That began to shift when Republicans took over Congress and brought with them different priorities and their own Medicare bill, which gave seniors the prescription drug benefit known as Part D. Then, in the run-up to the election of Barack Obama in 2008, momentum grew for new legislation that would bring health insurance to more Americans, further diverting reportorial attention from Medicare to expanding private health insurance. New reporters came on the beat and assumed they needed to cover the ACA, not Medicare. But, she added, “We were having a gigantic fight over 5% of the population.’ In other words, reporters were ignoring what was happening to a far bigger program that covers vastly more people and involves more money. In 2018, Medicare alone paid out $731 billion in payments, up from $462 billion in 2008. The significant cuts the ACA made in hospital and other provider reimbursements, about $716 billion over 10 years, were almost never a major Obamacare storyline. ‘It’s not just reporters,’ Rovner said. ‘Policymakers have moved on from Medicare and reporters follow the policymakers.’”

Bringing Awareness to the Isolation of Alzheimer’s

The trials and tribulations that follow an Alzheimer’s diagnosis extend, writes the Wall Street Journal’s Claire Ansberry, “to the calls that stop coming from friends. ‘I call it the friendship divorce. I have lost a fair amount of people in my life that I at one time considered friends,’ wrote one respondent, while another said, ‘People tend to run when they learn you have dementia.’ The friendship divorce goes both ways, says Greg O’ Brien, a 69-year-old journalist who was diagnosed with early-onset Alzheimer’s about nine years ago, lives on Cape Cod and is on the board of USAgainstAlzheimers. He’s lost friends, who he says slip away because they are afraid and don’t know what to say. He has also walked away from some. ‘I don’t spend time with people who don’t seem to understand the journey,’ says Mr. O’Brien. ‘I don’t judge them or hate them. I just stay away from them. A simple hug or touch is so important in Alzheimer’s. We’re not lepers.’ Ansberry concludes by offering a list of ways to be a friend in such circumstances; they include: 

Advances in Age-Friendly Emergency Care

There are some encouraging developments affecting how seniors are treated in a nation’s emergency departments, according to Health Affairs blogger Michele Cohen Marill. “The cramped Mt. Sinai ED on New York’s Upper East Side sees 116,000 patients each year. About one in five are ages sixty-five and older, and each of these patients receives a special screening, based on the Identification of Seniors at Risk (ISAR) tool. The screening starts with six questions about functional disability, memory or vision problems, recent hospitalizations, and polypharmacy (that is, the use of three or more medications). Track boards on large monitors indicate whether a patient came from a nursing home, had been hospitalized within the past thirty days, or needs a conversation about goals of care. This ED isn’t just a place for quick response. The team pauses for a closer look at these at-risk older patients, who are likely to require interventions that go beyond medical care. Delivering the right kind of care for older adults is an imperative that faces all health systems, as more than three out of four older adults have multiple chronic conditions. A hospital visit can be life saving but also life altering. Older adults are more likely to lose mobility and functional capacity after an ED visit, in a decline that lasts at least six months. In 2016 the John A. Hartford Foundation, a major funder of geriatric initiatives, partnered with the Institute for Healthcare Improvement (IHI) to turn the alphabet soup of acronyms into a simple but powerful movement via the Age-Friendly Health Systems initiative. A coalition of experts, from front-line caregivers to health policy makers, distilled ninety features of seventeen models into four essential elements. They called the elements the ‘4Ms’ of age-friendly care: what matters most to patients, mobility, mentation, and medication. That involves addressing delirium, dementia, or depression; an emphasis on maintaining safe mobility; a review of medications; and a conversation about the patient’s goals. “In a parallel effort with similar goals,” Marill continues, “the American College of Emergency Physicians (ACEP) began accrediting EDs in 2018, an effort sponsored by the Gary and Mary West Foundation and the Hartford Foundation. Level 3 accreditation, intended as a starting point or for hospitals with limited resources, requires the ED to have at least one geriatrics-trained nurse and physician; a geriatrics quality improvement program; and ready access to mobility aids, food, and drinks. As of mid-September 2019 98 hospitals had an accredited GED. Mount Sinai was among the first to gain accreditation for its ED and is one of ten hospitals to have a ‘gold standard’ level 1 GED. GED accreditation requires more than completing a checklist. It’s an approach to care. ‘To put it simply, a traditional emergency department, responding to a patient’s fall, figures out, ‘Did you hurt anything?’ and ‘Did you have a heart attack that made you fall?’ says Kevin Biese, an associate professor of geriatrics and emergency medicine at the University of North Carolina at Chapel Hill and chair of ACEP’s geriatrics accreditation program. ‘A geriatric emergency department takes that next step and says, ‘How can I prevent you from falling tomorrow?’”

Freestanding Inpatient Hospices Closing

Hopewell House, an inpatient hospice facility in Portland, Oregon, has closed its doors. “Should anyone care beyond the families of the thousands of people who would have died badly had it not been for Hopewell House?” asks Drs. Ira Byock and Erie Walsh. “We believe that everyone should care, because its closing highlights a chasm in the continuum of health services needed to prevent people from suffering needlessly before dying. Only a handful of freestanding inpatient hospice centers like Hopewell operate across the U.S. Each is an oasis where people with complicated, intractable distress benefit from technically sophisticated treatments for their symptoms that are delivered with tenderness in welcoming, home-like settings. Comfort reliably results. People’s intimacy is respected; their dignity preserved. By the time Hopewell House closed its doors on September 30, about 10,000 people had died there and another 9,000 or so had had their symptoms brought under control and returned home under continued hospice care. What’s forcing intensive hospice care facilities like Hopewell House to close is inadequate reimbursement for the services they provide. Overly restrictive Medicare and Medicaid regulations force programs to leave existing licensed hospice beds unfilled for fear of being fined for transgressing strict eligibility rules. From 2012 to 2017, inpatient hospice use dropped nearly 30% at Hopewell House and 15% across Oregon, decreases that are consistent with national trends. For-profit companies now dominate America’s hospice “industry” and, for the regulatory and financial reasons described, rarely open or operate hospice inpatient units. Public policy changes are necessary to fix this conundrum, because Medicare and Medicaid policies and payments are largely to blame. But having the capacity to meet dying patients’ needs is a matter of basic human values. Dying people have a right to the best care possible.”

The Soul of Care

Dr. Arthur M. Kleinman is a renowned scholar and writer who has taught at Harvard for over 40 years. But for a decade his main tasks involved caregiving for his wife Joan, and Dr. Kleinman has now authored a book — The Soul of Care — that tells that story and promises to take its place as one of the most significant explorations of what it means to undertake such tasks. “This was a painful book to write,” Kleinman relates in conversation with Drs. Eric J. Topol and Abraham Verghese “For a little over a decade, I took care of my late wife, Joan Kleinman, who had early-onset Alzheimer's disease. And not only did she have Alzheimer's disease, but it was a particularly frustrating type, because it started in the occipital lobes of her brain, which are responsible for, among other things, the interpretation of images. So, she was functionally blind as well as suffering from dementia. This was very cruel because she was a visual person, a fine painter and calligrapher in the Chinese tradition. As this awful decade developed, it was as if a veil of ignorance was pulled away from my eyes and I was seeing caregiving from the inside as a family caregiver. And I realized that, with all these decades of experience I’d had doing research on healthcare and being an active clinician, I really had lost the sense of what caregiving is for a family member. So, the first thing was, what do I mean by care? How is it possible, for example, to have healthcare without care, which is where we fit in the crisis of healthcare right now. By care, I meant just the kinds of things you read. I meant, first of all, the nature of the relationship that caregivers have with each other, since I believe that’s the most fundamental dimension of care. It’s a relationship. And it’s a relationship in which, once we focus on the care, it’s easy to forget about the care recipient — that is, the patient or family member who needs care, but who is just as important, if not more important, than the caregiver. And in this relationship, as I’ve experienced it and looked at it cross-culturally, there is a kind of gift exchange. It is an exchange of gifts in an anthropological sense in that the care recipient gives the gift of their vulnerability and their need to be helped, assisted; in turn, the caregiver gives the gift of their involvement and their attention, which is tied, I think, to their presence. When you look at family care, it involves a kind of a deep presence. It’s that relationship that’s begun long before and will end later. And it’s not just a one-time shot but something of intimacy and tension, because even for the most loving and committed caregiver, care is tough work. It’s hard physical work. It’s tough emotional work. And it’s moral work as well. So, besides presence, there’s also the issue of enduring. How do we endure? That’s what I felt throughout my 10 years of taking care of my wife. I was challenged to the core and wasn’t sure I could endure. I felt at times that I was enduring the unendurable. I could not have taken care of my wife for 10 years, doing the things I had to do, if it weren’t for the assistance of a terrific home health aide. The respite she gave me, the chance to get away and do my work, made me a much more successful caregiver. In fact, I don't think I could have done it with without her. I lucked out. The astonishing thing was that the medical specialty, neurology, which is responsible for patients with dementia, the neurodegenerative disorders, and stroke, is organized around diagnosis and a few medications, most of which are limited in their effectiveness. But the profession itself seems to have come to a conclusion that it has nothing to do with aftercare. Some of the great neurologists in the country are at Harvard Medical School, and they made the diagnosis of Joan’s Alzheimer's disease at least a year before it probably would have been made otherwise. They all wanted to help me; they knew me well and wanted to help me. Not one said anything about the care I would have to provide and what Joan would be going through. It astonished me. No one recommended a home health aide for me, which, as I just suggested, turned out to be absolutely crucial. And no one said anything about how I’d have to reconfigure the house so that Joan would be more comfortable there and I could take better care of her. No one mentioned anything about what the day-to-day living experience would be like, and where I would need assistance and how I could get it. And that was astonishing.” (Editor’s Note: readers interested in hearing more from Dr. Kleinman can access a webcast sponsored by Kaiser Health News where Judith Graham interviews him and then moderates a panel discussion.)

Heaven Through the Backdoor

FCA Staff Visits Artists Anna Fitch and Banker White

Artists Anna Fitch and Banker White hosted Family Caregiver Alliance staff for a behind-the-scenes look at their newest art installation project, Heaven Through the Backdoor . The installation documents the story of Yolanda Shae, a fiercely independent woman who chose to approach end of life on her own terms. The project was available for viewing through November 14 at the Headlands Center for the Arts in Marin County, where Fitch and White were artists in residence . Partnered on an arts grant to the artists, FCA will work with Fitch and White on a program — using the art installation — to discuss end-of-life issues for family caregivers in fall 2020 in the San Francisco Bay Area. Anna Fitch is an Emmy Award-winning director and Banker White is a multi-disciplinary artist and filmmaker. Their works include The Genius of Marian , a Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Award winner .

Family Caregiver Alliance Featured in Bay Area Parent Magazine

Bay Area Parent Magazine’s November issue includes an in-depth story about caring for aging parents, with many quotes from Amanda Hartrey, one of our family consultants at FCA. Please note: free registration on the magazine site is required.

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

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