Vol. 18, No. 4
April 30, 2018

In This Issue: Obamacare war fallout | skinny insurance plan proposal | state marketplace patchwork | AD research paradigm shift | AD funding bonanza | mindfulness and AD caregivers | ALS Project Revoice | Barbara Bush and palliative care | the palliative care access abyss | physician-assisted suicide in DC and Hawaii, self direction for HCBS | the elder care workforce | cardiovascular disease caregiving burden | home delivered meals and ER visit reductions | POLST no-nos | the threat of POCD | antibiotic overuse at the end of life | Medicare and opioids | the costs of family caregiver AD care | the long-term care financing challenge | unretirement | solitary senior contingency planning | unavailable advance directives | the corporate challenge to primary care docs | and the case for 24/7 family oversight of hospitalized loved ones.
April saw the ongoing fallout from the 2017 Obamacare battles unfold in the form of debate over proposed “skinny” health insurance plans, essential benefit packages and insurer medical spending requirements, and states’ moves to emulate Kentucky by imposing work requirements on expanded Medicaid populations.
Essential Health Benefits Will Vary by State in 2020
The Trump Administration dropped one shoe in the form of a 523-page final regulation that, starting in 2020, as reported by Governing’s Mattie Quinn, will allow states to develop their own version of essential health benefits. “Under the current rules adopted by the Obama Administration, states have one benchmark plan that defines how essential health benefits are covered in every plan. State officials will still have to offer the 10 essential health benefits established by the ACA—including coverage for maternity care and mental health services—but they’ll be able to pick and choose benchmarks, such as fewer covered doctors’ visits or prescription drugs. The new rule also lets states loosen regulations on insurers’ spending. The ACA required companies to spend 80% of their profits on patient healthcare and quality improvement. Starting in 2020, states can request permission from the feds to allow insurers to spend more on their overhead costs if officials can prove it will stabilize premiums.”

Added Modern Healthcare’s Shelby Livingston, “States will be able to adopt another state’s 2017 benchmark plan, replace one or more of its benefit categories with that of another state’s, or completely build a new essential benefits package from scratch so long as the plan is not too generous and is in line with a typical employer plan. When the change was proposed in October, policy experts were wary of giving states greater power over essential benefits, saying the move could lead to skimpier coverage in the marketplace. The CMS made rate adjustments in the proposal, such as tweaking the definition of a typical employer plan, to relieve some of their concerns.”
The Repeal Failed, but the Sabotage Continues
For New York Times reporter Margot Sanger-Katz, the regulations, coupled with proposed changes that would permit longer-term “skinny” insurance plans, add up to “the kind of markets that Republicans in Congress imagined when they wrote their health bills last year. While those bills failed, in the face of large public protest, the regulations will quietly bring us closer to the reality they imagined by making the insurance market covered by the existing Obamacare rules increasingly optional. Alongside the Obamacare market it couldn’t destroy, it is helping to build a second market, free of many rules, and more like the market that Obamacare replaced.” The Administration, Katz goes on, “has proposed regulations that would allow so-called short-term health plans to be offered for nearly a year of coverage. Those plans aren’t subject to any Obamacare rules in most states, and are likely to be marketed aggressively. People buying those plans may face some unpleasant surprises. The plans are likely to require applicants to fill out detailed health histories, and to exclude those with prior illnesses. They also are likely to exclude or limit services that all Obamacare plans require. Association plan buyers have tended to have problems with fraud, and some short-term plans have a history of declining to pay for serious illnesses after the fact. But even if the new plans serve their customers well, their popularity could leave the remaining markets a bit shakier. Because the short-term plans will be open only to the healthy, remaining customers will tend to be sicker, and more expensive to ensure.”
Organizations Express Concern Over ‘Skinny’ Plans
The perceived threat to health care coverage posed by the Administration’s moves prompted 113 organizations representing consumers and patients across a wide spectrum to write Congressional leaders expressing concerns “about the impact of the proposed rule regarding short-term limited duration plans will have both on the health insurance marketplaces and the individuals we represent. The proposed long-term ‘skinny’ policies are allowed to charge much higher premiums, deny coverage altogether for consumers who cannot meet medical underwriting standards, and impose lifetime and annual limits on services. If the proposed rule put forward by the Administration is finalized in its current form, it will limit access to quality and affordable health insurance coverage for all Americans, and disproportionately harm individuals with preexisting conditions and people with disabilities.”
New Jersey Acts to Protect Obamacare
Developments at the federal level are resonating among the states, but the impact is quite disparate. In New Jersey measures to protect the Obamacare marketplace and shield patients from unexpected out-of-network “balance billing” charges have moved close to enactment. The marketplace measure contains two major elements: a first-in-the-nation, state-legislative-passed replacement for Obamacare’s repealed individual mandate penalty—that in turn will be used to fund an insurance market reinsurance pool.
Medicaid Work Requirements
Meanwhile, a Michigan Senate panel took the first step towards mandating that able-bodied adults would have to complete 29 hours of work, job training, or education per week to qualify for Medicaid. Tennessee’s Legislature has completed work on a bill that, after Governor Bill Haslam’s expected signature, will require able-bodied people without children under the age of six to spend 20 hours a week working, volunteering, or attending school. “Some lawmakers,” the Associated Press reported, “said that’s an easy enough requirement to meet because Tennessee allows adults without a degree or certificate to go to community college or technical school without having to pay tuition.” Consumer advocacy organization Justice In Aging, however, does not agree, arguing in a new fact sheet that such requirements will result in older adults losing health insurance if they can’t work, people with disabilities who rely on Medicaid losing their coverage, additional burdens on care rendered by the family caregivers, family caregivers losing their own Medicaid coverage, and, because of complicated eligibility rules, even working or exempt individuals losing coverage.
States’ Wide Spectrum of Health Insurance Coverage
What all this will add up to, observed Modern Healthcare’s Shelby Livingston, “is a patchwork of insurance laws and regulations, leading to differences in coverage affordability and access across the 50 states. Massachusetts is the only state that currently requires its residents to have health insurance, but at least nine other states are considering a mandate to promote continuous coverage, according to the Wall Street Journal. These include California, Connecticut, Hawaii, Rhode Island, Washington, Maryland, Minnesota, Vermont, and the District of Columbia. Some states are also considering restricting the sale of short-term insurance plans. Massachusetts, New Jersey, and New York effectively ban short-term plans by requiring extensive consumer protections, according to the Commonwealth Fund. Other states, like Colorado and Oregon, limit the plans’ duration to three months. Still other states are looking at setting up reinsurance funds to help subsidize high-cost patients. Even Wisconsin, whose governor Scott Walker has vigorously opposed implementing Obamacare in his state, is pursuing the reinsurance route. At the other end of the spectrum however,” Livingston points out, “are Idaho and Iowa, red states that are attempting to sidestep ACA coverage rules to expand plan choices on the exchanges. Idaho’s insurance regulators in January issued guidelines that would have allowed insurers in the state to get out of some ACA rules as long as they offered ACA-compliant plans as well. The CMS rejected the idea, but Idaho officials are planning to submit a revised blueprint. Iowa GOP Governor Kim Reynolds signed legislation this month to allow the Iowa Farm Bureau to partner with Wellmark Blue Cross and Blue Shield to sell health benefit plans that skirt ACA protections. The workaround is similar to an arrangement in Tennessee, which allows the State Farm Bureau to sell unregulated health plans. All of these individual efforts,” Livingston concludes, “move the U.S. away from the ACA’s goal: uniformity of coverage for consumers and, by proxy, access to the front door of America’s health care system. ‘States need to proceed pretty carefully,’ said Massachusetts health policy consultant Rosemary Day. ‘If people really get sick and need insurance they need that coverage. That’s not a red or blue state issue. That’s just reality.’”
Proposal to Redefine Alzheimer’s Disease With Biomarker Confirmation
April saw the occurrence of several major developments related to Alzheimer’s disease. On the clinical side, the National Institute on Aging and the Alzheimer’s Association released a proposed research framework that would shift the definition of Alzheimer’s disease in living people from the current one—based on cognitive changes and behavioral systems with biomarker confirmation—to a strictly biological construct. This represents, AA said in a press release, a major evolution in how we think about Alzheimer’s. “This evolution of the previous diagnostic criteria is in line with most chronic diseases that are defined biologically, with clinical symptoms being a consequence. Other areas of medicine have used this approach to define disease processes using biomarkers: for example, bone mineral density, hypertension, hyperlipidemia, and diabetes are defined by biomarkers. Therapies that address these biomarkers have been shown to reduce the likelihood of developing fractures, heart attacks, and strokes. Biomarker evidence of Alzheimer’s disease indicates the presence of the disease whether or not symptoms are present, just as an abnormal HbA1c indicates the presence of diabetes whether or not symptoms are present.”

Commenting on the proposal’s announcement, Fortune’s Sy Mukherjee focused on its implications for drugmakers. “If this framework is officially adopted,” Mukherjee observed, “it would give drugmakers specific biological markers to home in on: the buildup of beta-amyloid and tau proteins, which cause brain plaques associated with Alzheimer’s, and brain nerve cell death. Picking up on these potentially telltale signs early on may help biopharma firms recruit a wider swath of patients at risk for developing the downstream symptoms of Alzheimer’s and create more treatments that help prevent that kind of progression—or at least that’s what the hope is.”
Increased Funding for Alzheimer’s Sparks Optimism at NIA
Developments in clinical and research approaches to achieving the current goal of producing an effective AD treatment by 2025 have been matched by significant increases in AD funding, as well as support for even greater amounts. NIA’s AD budget received a hefty $414 million budgetary increase for the current fiscal year. Writing in the agency’s blog, NIA’s extramural activities director Robin Barr observed that “Once upon a time NIA and aging research itself were almost a backwater—a smallish community that was growing by the odd fit and start. Lately we are front and center, in the news, and growing by leaps and bounds. With this new attention, high expectations are our constant companion. We hope that these funds can deliver a future that provides relief to patients and their families to bear the burden of Alzheimer’s disease and related dementias, as well as the challenges of aging in general.”
Senators Urge Continued Funding to Meet 2025 Goal to Prevent and Treat Alzheimer’s
Punctuating Barr’s celebration of Congress’ funding generosity, 38 Senators, led by Senators Susan Collins, Mark Warner, and Ed Markey, have written Senate committees to urge appropriation of even greater resources in the next fiscal year. While not calling for a particular dollar amount, experts convened under the National Alzheimer’s Project Act, authored by Collins, said that $2 billion per year in research funding was needed to prevent and treat Alzheimer’s by 2025. Almost 6 million Americans have AD, with overall annual costs to the country of $277 billion, including $186 billion to the Medicare and Medicaid programs, according to the Senators. They are also calling for increased funding to Alzheimer’s and dementia-related initiatives at DHHS’s Administration for Community Living and Centers for Disease Control and Prevention.
Mindfulness and Acceptance-Based Interventions in Reducing Caregiver Depression
While dementia patients and their families anxiously hope that increased AD resources and creative thinking will indeed bear fruit, researchers in England have examined the current efficacy of mindfulness and acceptance-based interventions (MABIs) in reducing levels of depression and burden in informal dementia caregivers. In a meta-analysis of 12 studies assessing the value of mindfulness-based stress reduction (NBSR), mindfulness-based cognitive therapy (MBCT), acceptance and commitment therapy (ACT), and dialectical behavior therapy (DBT), the researchers conclude that “MABIs are largely effective at improving symptoms of depression and moderately effective at reducing burden in informal caregivers of people with dementia. In addition to the effectiveness findings, the average attrition among participants was relatively low. A strong association has been found between experiential avoidance and depressive symptoms in dementia caregivers, and the engagement of caregivers and services has been linked to a struggle with acceptance of the diagnosis and negative beliefs about dementia. Therefore, these caregivers may be more likely to continue with therapy that reduces experiential avoidance, increases acceptance of internal and external experiences, and develops a nonjudgmental stance.”
Giving Back Their Voice to Those Living with ALS
While AD was a prominent feature of recent news items, another disease—ALS or motor neuron disease—yielded a significant effort by the ALS Association to address one of illness’s many devastating impacts: the loss of the ability to speak. Project Revoice has been launched, an international initiative to help people with ALS record their voices so they can still use them after they lose their ability to speak. The new technology, powered by the Canadian company Lyrebird, can recreate high quality voices with only a few hours of “voice banking.” ALS patient Pat Quinn demonstrated the power of this innovation, with footage from his many pre-ALS interviews used to clone his voice. “This takes speech tech to a whole new level,” Quinn said. “It means everything to how I communicate. I really didn’t like to hear my old computer voice, so I often avoided getting involved in conversations. This technology gives me back a vital piece of myself that was missing. After hearing my voice through this technology, I was blown away! Patients who know that they can still speak in their own voice after ALS takes it away will transform the way they live with this disease.” Lyrebird’s state-of-the-art learning algorithms create artificial voices that sound more natural than has ever been possible. Using just two to three hours of high-quality audio recordings, this model can synthesize the essence of a voice and build a complete digital recreation. Project Revoice linked this tech with eye reader assistive technology to enable Pat Quinn to deliver words in his original, unique voice, rather than a machine voice.
Barbara Bush’s Gift: An Understanding of Palliative Care and the Importance of Advance Care Planning
Unexpectedly occurring almost simultaneously, the passing of former First Lady Barbara Bush—in the wake of the Bush family’s public declaration that she had opted to receive only comfort care during the last stages of breathing failure—and the annual National Health Care Decisions week combined to intensify attention to end-of-life decision-making. In Washington D.C. elder care services provider Iona used the latter event to publish a guide to the many online resources individuals can access as they grapple with formulating and communicating their final wishes.

Reporting on Mrs. Bush’s decision to forgo intensive life-preserving treatment, Kaiser Health News’ Melissa Bailey and JoNel Alecia, noted the widespread applause that her action engendered among those seeking to encourage individual end-of-life life care decisions. “Dr. Haider Warraich, a fellow in cardiovascular medicine at Duke University Medical Center, commended the Bush family for putting the phrase ‘comfort care’ into the public sphere so that other people can consider it a viable option at the end of life. But,” Warraich said, “the family statement also creates confusion about the meaning of such care by suggesting that it entails stopping medical treatment. Comfort care usually refers to palliative care, which focuses on managing patient symptoms to keep them comfortable and retain their dignity. The common myths about palliative care are that they are being denied medical help. For heart failure patients comfort care usually means opting not to use a breathing machine or CPR. But patients do continue to receive medical treatment, including morphine to ease shortness of breath, and diuretics to remove excess fluid from the lungs.”
Lancet Commission Recommends Expansion and Availability of Palliative Care
A clarion call for legitimizing and expanding the availability of palliative care on a universal coverage basis has come from the Lancet Commission on Alleviating the Access Abyss in Palliative Care and Pain Relief. At an early April, 2-day conference at the University of Miami, experts gathered to discuss the commission’s recommendations, including the establishment of a new metric—severe health-related suffering—to uncover the epidemic of suffering afflicting communities worldwide. In a piece published in connection with the conference, Lancet editor Richard Horton, fervently made the case for paying heed to this suffering. “Universal health coverage,” Burton wrote, “will only be universal if it includes palliative care. Those financing health programs, from governments to foundations, must now embrace the essential package promulgated by the commission. The forces that continue to marginalize palliative care are powerful. Stigma tops the list: medicine regards the notion of alleviation of suffering as someone else’s problem. Palliative care is too often seen to indicate failure—the failure of medicine to cure. The hubris of modern medicine is that it cannot face up to failure. But as the commission makes clear, palliative care is not about failure. It is fundamental to any notion of human dignity in the face of illness or disease. The Lancet’s commitment will be to work with the commission to expand its network of supporters and collaborators, and to publish regular country-by-country assessments of serious health-related suffering. Measurement is a first step towards independent accountability.”
Medical Aid-in-Dying in D.C. and Hawaii
Meanwhile the contentious issue of physician-assisted suicide made news as the Washington Post examined the impact of the capital city’s year-old legalization. The results so far: not a single patient has used it. And, writes Fenit Nirapill, “just two of the approximately 11,000 physicians licensed to practice in the District have registered to help patients exercise their rights under the law. Only one hospital has cleared doctors to participate. Officials with the national advocacy group Compassion and Choices blame local health officials for creating what they consider a cumbersome process that dissuades doctors from participating. Health officials imposed requirements in response to concerns that patients could be pressured into an early death. The practice is especially controversial among African-Americans, who make up half of the D.C. population, because of the historical distrust of the healthcare system.” Further adding to the policy debate, Hawaii has become the seventh state to legalize medical aid-in-dying for terminally ill patients. Set to take effect on January 1, 2019, “This legislation has been written to ensure that the patient is in full control,” Gov. David Ige said as he signed the measure. “When I think about this law it is impossible not to think of friends and family who have struggled through a difficult prognosis. We know that out loved ones will eventually die but they don’t need to suffer.”
AARP Public Policy Institute Report on HCBS Self-Direction
Building on its considerable previous research concerning Medicaid long-term services and supports, AARP’s Public Policy Institute has published a comprehensive report detailing “innovative strategies to expand options for self-direction” for home and community-based services. Taking a look at programs in four states—Texas, Iowa, Wisconsin, and Florida—the PPI paper observes that “studies show that people who self direct their services are more satisfied with them, experiencing equal or improved outcomes than people whose services are directed by an agency. Nonetheless the highly individualized nature of the service plan and concerns about the ability of plan participants to manage their services effectively can create barriers that hinder states to take their programs to the next level. Self-direction,” the report observes, “grew out of the independent living movement and shares many of its values, as self-direction seeks to maximize personal choice and control over the supports and services that work best for participants. Self-direction begins with a person-centered plan that is developed by the participant and the program planning team (often referred to as the circle of support); this plan outlines the participant’s goals and objectives. A person-centered plan can provide a level of autonomy many of us take for granted, as it is gives participants in a self-directed program control over what services they receive, who provides the services, and when, where, and how these services are provided.”
Year-Long Blog Series to Look at Solutions to Prepare Healthcare Workforce to Care for Older Americans
Commemorating the 10 th anniversary of the National Academy of Medicine’s landmark study, “Retooling for an Aging America,” the Eldercare Workforce Alliance has launched a year-long series of blog posts focused on advancing innovative solutions to preparing the healthcare workforce to care for older Americans. “As recommended in the NAM report, EWA recognizes the critical role family caregivers play in the care team of older adults. In fact national caregiver organizations participate alongside workforce associations as members of EWA to provide critical input on family caregiving. A family-centered healthcare delivery system that addresses the needs of family caregivers and integrates their role in the health care team is vital to supporting family caregivers.”
American Heart Association: Family Caregiving Costs to Double by 2035
More distressing news concerning the rising costs of caregiving comes from the American Heart Association. AHA, as reported by Medscape’s Megan Brooks, “predicts that the cost of informal caregiving for patients with heart disease and stroke will double from $61 billion in 2015 to $128 billion in 2035, with the total projected costs of treating cardiovascular disease increasing from $616 billion in 2015 to $1.2 trillion in 2035. By 2035, the number of Americans living with heart disease and stroke will rise to 131.2 million—45% of the total U.S. population. Understanding the escalating burden this will place on with family members and friends who care for these individuals is essential if we are to address this looming crisis, AHA CEO Nancy Brown said in a news release. The AHA’s recommendations for this tsunami of CVD care challenges include acting on recommendations in the NASEM’s 2016 report Families Caring for an Aging America— support informal caregivers, establish payment reforms that motivate providers to engage caregivers in healthcare delivery, pursue federal policies that provide economic support for caregivers, review state initiatives that address care needs, make palliative care available to patients with advanced CVD by expanding access to all hospitals and community-based settings, and embed caregiver engagement and outcomes in performance and payment reforms. AHA also urges rapid implementation of the recently enacted RAISE Family Caregivers Act, which provides a framework for public and private sector stakeholders to develop and execute a national family care strategic action plan.
Food Insecurity Responsible for $77.5 Billion in Healthcare Costs
A Health Affairs study emanating from Massachusetts, as reported by Washington Post reporter Carolyn Y. Johnson, finds that “delivering meals to sick people might be a simple way to cut back on emergency visits and hospitalizations, reining in some of the costliest kinds of medical care. Low income seniors or disabled people who received home-delivered meals—particularly those designed by a dietitian for that person’s specific medical needs—had fewer emergency visits and lower medical spending than a similar group of people who did not receive meal deliveries,” according to the study. “There’s growing evidence that the forces that shape health aren’t just access to medicines, doctors visits, or surgeries, but factors such as the neighborhoods people live in, economic security, and access to housing and transportation. According to one analysis, people who lack reliable access to food are responsible for $77.5 billion per year in excess healthcare expenditures. ‘People, when they face food insecurity, often make a lot of trade-offs: Do I pay for my food? Do I pay for my medicine?’ University of North Carolina’s Dr. Seth Berkowitz asked. ‘Not knowing where your next meal is coming from is stressful. It may be difficult to manage your chronic condition when you worry about that.’”
Recent Webinar on Money Follows the Person Program
In late March the National Center on Law and Elder Rights conducted a webinar regarding Medicaid’s Money Follows the Person program. Focusing on New Jersey, the program described various legal issues that arise in complex nursing home transitions and how New Jersey’s experience can help address some of these issues. The presenters also reviewed federal HCBS person-centered planning rules to explore how those rules can be used on behalf of nursing home residents in an effort to transition back to the community. Slides from the presentation are available here .
Potential POLST Problems
Writing in the American Bar Association’s Bifocal publication, long-term elder law expert Charlie Sabatino addressed the “seven deadly sins” of the POLST—Physician Orders for Life-Sustaining Treatment—and how to avoid them. Sabatino’s to-be-avoided list includes using POLST with people who are too healthy; signing a POLST form without meaningful discussion; having patients complete their own POLST form and, in the process, confusing it with an advanced directive; failing to review past forms to account for changed circumstances; letting POLST disappear because of failed inter-facility sharing mechanisms; failing to evaluate one’s use of the POLST paradigm and providing inappropriate incentives for completing POLST. With regard to the last no-no, Sabatino points out, paying physicians or facilities bonuses for completing POLST forms, while increasing their number, could happen at the cost of the quality, appropriateness, and voluntariness when those variables are not incentivized. Paying for the time it takes to have advance care planning discussions is understandably important, but if that is measured simply by the number of advanced directives or the number of POLST forms, unintended consequences are more likely.
Understanding Postoperative Cognitive Dysfunction (POCD)
Add POCD–postoperative cognitive dysfunction–to the list of unwanted aftermaths of otherwise lifesaving and/or restorative surgery. Kaiser Health News’ Judith Graham explores the little-known phenomenon that leaves a substantial number of older surgical patients with memory problems or difficulty multitasking, learning new things, following multi-step procedures, or setting priorities. “There are many unanswered questions about POCD. How should this be measured? Is it truly a standalone condition or part of a continuum of brain disorders after surgery? Can it be prevented or treated? Can it be distinguished in the long-term from the deterioration in cognitive function that can accompany illness and advanced aging? Some clarity,” Graham writes, “should come in June when a major paper outlining standard definitions for POCD is set to published simultaneously in six scientific journals. Scientists will then discuss the latest developments at a two-day summit conference. A current project examining adults 55 and older who have major non-cardiac surgeries is finding that up to 30% of patients are testing significantly worse than their baseline three months later, according to lead researcher Dr. Stacie Diener, anesthesiologist and geriatrician at the Icahn School of Medicine at Mount Sinai in New York City. Johns Hopkins anesthesiologist Dr. Charles Brown IV observed that people who are older with some unrecognized brain pathology, or people who have some trajectory of cognitive decline at baseline, those are the patients who you’re going to see some change in one, two, or three years out. ‘Surgery is a good thing—it improves quality of life—and most older patients do really well,’ said Brown. ‘Our trick is to understand who we really need to identify as high risk and what we can do about modifiable factors.’”
Antibiotic Use at the End of Life
Another, albeit different kind of unwanted result of undergoing treatment, is addressed by Health Affairs blogger Timothy Sullivan in an article about antibiotic use at the end of life. “Antibiotic overuse,” Sullivan writes, “is a principal cause of drug resistance. Although national reporting of deaths from drug-resistant bacteria is inconsistent, a recent report from Reuters found that from 2003 to 2014, antibiotic resistant infections contributed to more than 180,000 deaths in the United States. With respect to hospice patients, in one study the vast majority who received antibiotics did not have a documented infection. In addition to being given to patients without infections, antibiotics may be misused at the end of life by being given to people who do have bacterial infections, but who are unlikely to benefit. For some dying patients the greatest harm of antibiotic use may simply be to prevent a relatively quick and peaceful death. Of course,” Sullivan observes, “antibiotics can also be beneficial at the end of life. Not all terminally ill patients are suffering and many still want to receive aggressive care. Antibiotics may help some dying patients overcome an acute infection and gain more valuable time. Some infections are themselves painful or distressing, and antibiotics can relieve those symptoms. But a basic tenet of modern medicine is for physicians to foster shared decision-making by reviewing the possible outcomes of any intervention with patients and families. To prevent antibiotic overuse at the end of life, an important first step would be for doctors and patients to begin to think of antibiotic administration like any other invasive medical procedure, with significant risk that should be weighed against the possible benefits.”
Opioids: Reducing Access While Treating Chronic Pain
While the proper use of antibiotics is one of the major issues confronting clinicians and patients, the biggest elephant currently in the room is opioids: how to use them and how to prevent overuse. For Medicare, the most recent stab at resolving the dilemma is a regulation that, as of January 1, 2019, will deny coverage for more than seven days of opioid prescriptions, equivalent to 9 mg daily, except for patients with cancer who are in hospice. Underlying the growing debate over this approach, New York Times reporter Jan Hoffman observes , “is a fundamental dilemma: how to curb access to the addictive drugs while ensuring that patients who need them can continue treatment. ‘A lot of the opioid dose escalation between 2006 and 2011 was terribly ill advised,’ said University of Alabama addiction medicine professor Dr. Stefan Kertesz. ‘But every week I’m trying to mitigate the trauma that results when patients are taken off opiods by clinicians who feel scared. There are superb doctors who taper as part of a consensual process that involves setting up a true care plan. But this isn’t it.’ Opponents of the new limit,” Hoffman reports, “say that doctors are already overwhelmed with time-consuming paperwork and that many will simply throw up their hands and stop prescribing the drugs altogether. A delay or denial would put chronic pain patients—or those with inflammatory joint diseases, complex shrapnel injuries, or sickle-cell disease—at risk of precipitous withdrawal and resurgence of pain.”
The Cost of Alzheimer’s Disease
Several recent studies offer ever more striking documentation of the financial burdens caregivers face in shouldering the needs of ailing family members. For the San Francisco Bay Area’s Winter family it was early-onset Alzheimer’s disease that brought on the financial distress accompanying the emotional and clinical challenges. “The average lifetime cost of care for a person living with dementia,” writes Lisa M. Krieger in the Mercury News, “was $341,840 in 2017, with 70% of this cost borne to families through out-of-pocket payments and the value of unpaid care. For Dennis Winter, a professional classical musician with a doctorate in music, who was diagnosed with early-onset eight years ago at age 57, the price tag has already surpassed that. And because he’s only 65 and in good physical health, he could need many more years of increasingly intensive care, pushing costs still higher. The average patients survives 8 to 10 years, but those with early-onset of the disease can live for another two decades. While patients with cancer and heart disease don’t need nursing care until the final weeks or days, if at all, dementia patients may need custodial care for many years. ‘If you have hospitalization in people with Alzheimer’s, Medicare will pay for almost all of it,’ said Dr. Kenneth Covinsky, a U.C. San Francisco geriatrician and professor of medicine. ‘But it won’t pay for a memory care facility and if the patient is at home, God forbid you need a day off or help of care—that comes out of your pocket.’”
Study Reveals Caregivers’ Financial Contribution to Caregiving
CNBC’s Sarah O’Brien puts the caregiving financial crisis in a broader context as she discusses a new Northwestern Mutual C.A.R.E. Study. “More than two thirds of caregivers report providing financial support related to their role. A third spend at least 20% of their monthly budget on caregiving-related expenses. The study offers a monthly breakdown of this contribution: medicine/medical supplies: $273; food: $159; personal care: $151; medical care: $107; clothes: $67; transportation: $54; and profession advisors: $32.
Who Will Pay for the Increased Demand for Long-Term Care?
Given both the personal and societal financial dimensions of satisfying long-term care needs, policymakers are struggling to devise a viable approach to buttressing the current inadequate public-private mix of support mechanisms. “Barring a miraculous and sustained spirit of economic growth with profits equitably distributed among the population,” Health Affairs blogger Karl Polzer writes , “the reality is that as the boomers begin consuming long-term care, only about 15 to 20% will have enough income and assets to afford to pay for a variety of long-term care services at home, in assisted living, and nursing homes. Suppliers of high-end assisted living and home care will flex to meet the needs of the wealthiest. Medicaid will be tasked with the needs of the bottom half of the economic spectrum, and likely will remain de facto social insurance for the remaining middle-class. A related policy blind spot is that no one is asking yet how Medicaid will pay for the investment in infrastructure to handle increased demand, given Medicaid’s submarket payment rates.” What to do? There might be, Polzer argues, “a small patch of the policy middle ground where action can be taken. Regardless of what type of government funding we end up with, policymakers, providers, financial insurance industries, and consumer groups can think in the present and develop practical and modest scale ‘stair steps’ to help cover long-term care costs. These tools include increased flexibility to pay for such care through 401(k)s and IRAs; help for extended family members to contribute to long-term care costs for a relative; section 529 savings accounts for elders; and further development of substitutes for traditional long-term care insurance such as hybrid products and underwritten annuities that can be bought as long-term care need arises. A larger government role in financing long-term care is a bridge American society and its leaders now do not want to look at—much less attempt to cross. But what we can do now is stop fighting old wars, understand major socioeconomic shifts, and try to help the country’s economic middle find practical ways to pay for long-term care in ways that are compatible with larger policy responses down the road.”
More Americans Over Age 65 Are Working
For one group of aging Americans, the threat to their well-being posed by the inadequate long-term care safety net is being held at bay by what economists are calling “unretirement.” As Paula Span reports in her New York Times New Old Age blog, Sue Ellen King, a Jacksonville, Florida, critical care nurse for 38 years, enjoyed a full retirement send off by her coworkers and went off to begin a life of leisure—for exactly 3 months. “I’d done all the preparation, except to really think about what life is going to be like,” King told Span. “Days spent organizing recipes and photos, and lunching with friends, proved less engaging than expected.” So, Span writes, “when King’s handpicked replacement needed a maternity leave, she jumped at the chance to return for three months. Now back to in a work part-time position she designed for herself, she calls herself a ‘failed retiree.’ A Pew Research Center analysis found that the proportion of Americans over age 65 who were employed full-time or part-time had climbed steadily from 12.8% in 2000 to 18.8% in 2016. More than half are working full-time. Why go back to work? We hear endless warnings about Americans having failed to save enough, and the need for income does motivate some returning workers. But, says Harvard economist Dr. Nicole Maestas, using longitudinal data from the National Health and Retirement Study, the decision to resume working doesn’t usually stem from unexpected financial problems or health expenses. Longer lives, better health and less physically taxing jobs than in previous generations help provide a choice. ‘You hear certain themes: a sense of purpose. Using your brain. And another key component in social engagement. Earning money, while welcome, rarely seems to be the primary incentive.”
Maintaining Independence While Aging Alone
“Single? No kids? Don’t fret” New York Times Susan B. Garland reassures in an article exploring how seniors can avoid the potential pitfalls of a solitary old age. “Data from a 2016 study conducted by geriatrician Dr. Maria Torroella Carney show that about 22% of people 65 and older are childless or have children who are not in contact. ‘People, who are aging alone,’ Carney observed, need to make plans when they are independent and functional. They need to learn about the resources and an appropriate time to start using them. Those services could include senior-friendly housing and the growing number of home delivered products and services aimed at the aging-solo market.’ Houston elder lawyer Christina Lesher suggests appointing a ‘micro-board’ which includes a lawyer, healthcare financial agent, accountant, and a geriatric care manager. ‘The board,’ Lesher says, ‘can step in if the client cannot make decisions. The client could assign a network of friends and neighbors to call in an emergency or if they notice any cognitive decline.’” Garland goes on to review a variety of strategies involving living arrangements, the preparation of appropriate legal documents, and the use of fast emerging services and technological breakthroughs to assist individuals seeking to maintain their independence for as long as possible.
Hospital Confusion and Error Negate Patient Wishes
The stresses associated with current medical practice arrangements play out in a number of settings and pose a variety of patient care risks. One such setting and risk is addressed by New York Times contributor Dr. Daniela Lamas, as she warns, “you detailed your last wishes, but doctors may not see them.” Lamas writes movingly about the breakdown in communication that can occur in the hospital emergency room where life and death decisions must be made quickly, and a record of one’s emergency wishes, assuming one has been created, is not readily available given the current poor state of universally available medical data. Through interviews, Lamas writes, “I heard stories of patients who had been transferred to nursing facilities without their advanced directives and returned to the hospital intubated when that was explicitly not what they wanted. Others told me about patients who’d grown ill on vacation only to end up in a hospital they’d never been to, with an entirely different electronic medical record and no one able to access any prior documentation.” Lamas’s article describes one episode in which a patient who had expressly indicated he wanted only comfort care in the event of a cancer-induced end-of-life crisis was about to be intubated by an unaware ER physician. An alert training resident noticed a DNR note buried in the patient’s computerized medical record and rushed to the ER to intercept the intubation. “When the attending resident arrived outside the patient’s room, he was relieved to see that the elderly man was still breathing on his own. The patient’s family was on its way up. In the ICU the patient was treated gently with fluids, antibiotics, and oxygen. He never did get strong enough to make it back home, but I think he was quiet and comfortable in the end as he had wanted. At the time, that felt like success. Looking back, I realize that we were just lucky—and that’s not enough.”
The Changing Face of Primary Care
 Looking at the less life-threatening scenes of medical care–office visits–New York Times reporters Reed Abelson and Julie Creswell seek to determine whether we are witnessing the disappearance of primary physician care as insurers and big pharma ramp up the availability of walk-in clinics and urgent care centers staffed by nurse practitioners and physician assistants. “Is the doctor in?” Abelson and Creswell ask. For one perspective they interview CVS chief medical officer Dr. Troyen A. Brennan. The company, Brennan tells them, hopes its proposed merger with Aetna will allow it to transform their current clinics where “a nurse practitioner might offer a flu shot, into a place where patients can have their conditions monitored. It requires new and different work by nurse practitioners. But we’re not trying to buy up an entire layer of primary care. People will have the option of using the retail clinic to make sure their hypertension or diabetes is well controlled, with tests and counseling provided as well as medications. The goal is to reduce the cost of care for what otherwise would be very expensive conditions.” A quite different point of view comes from more traditional doctors for whom, the reporters write, the importance of continuity of care cannot be overstated. “It takes a long time to gain the trust of the patient,” family medicine practitioner Dr. Shawn Purifoy observed. One of his longtime patients learned he needed cardiac bypass surgery even though he had no symptoms. The patient credits Dr. Purifoy with urging him to get a stress test. “If he hadn’t insisted it would have been over for me.” Adds Dr. Purifoy: “Those relationships take time and follow-up. It’s not something I can do in a minute. You never going to get that at a MedExpress.”
Focus on Hospital Patient Safety Needed
Eternal vigilance is not only a guarantor of liberty; for Dr. Tejal Gandhi, 24/7 bedside monitoring of a hospitalized family member can spell the difference between health improvement and highly deleterious treatment. Gandhi, chief clinical and safety officer at the Institute for Healthcare Improvement, trades her professional role for that of a devoted daughter as she discusses the experiences of her parents in separate hospital stays. In the case of her father, a massive gastrointestinal bleed while in his late 70s sent him to his local hospital where doctors’ care saved his life. But, Gandhi writes, “during my dad’s weeks in the hospital, we had family members with him 24/7, and we made a daily list of what was supposed to happen and what wasn’t. The doctors had put up a sign in the room instructing staff not to draw blood from my father’s left arm because of a clot. Nevertheless, multiple times the staff tried to draw blood from that arm, and family members had to stop them. Ultimately, my father ended up with three hospital-acquired problems—deep venous thrombosis, surgical site infection, and a central-line bloodstream infection. The clinicians at the hospital saved his life, and that was fantastic. But then these preventable things happened afterward that made his recovery a lot harder and longer. The main thing I thought about was, my father had me, an internist and safety expert, and other family members constantly at his bedside. What about patients who don’t have that? But I’m not sure,” Gandhi concludes, it would be any better anywhere else. Every place has preventable errors. There’s a long way to go to get healthcare to be a safe industry. To prevent these things from happening, there needs to be a deep focus on patient safety and system design.”
Your Help is Needed to Support California’s Working Family Caregivers

California Work & Family Coalition—an alliance of community organizations (including Family Caregiver Alliance), unions, non-profits, and individuals—works to help parents, caregivers, and families thrive. In January 2018, the Coalition partnered with Human Impact Partners to conduct a research project to identify the resources and supports working caregivers need, including access to a program provided by the State of California, called Paid Family Leave (PFL). Read more and access the survey here.
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Contributing to Caregiving Policy Digest are Alan K. Kaplan, attorney and health policy consultant, Kathleen Kelly, and Francesca Pera (editing and layout).

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