Vol. 18, No. 2 February 26, 2018

In This Issue: Budget Act health goodies, Obamacare enrollment figures, Medicare out-of-pocket costs, home care coverage prospects, Medicaid waiver debate (it roils on), hospital at home success, palliative care developments, HCBS, bundled heart failure payment, Medicaid assisted living failings, antipsychotic drug overuse in nursing homes, complex medical needs care, wasteful healthcare spending, family medical leave anniversary, the plight of paid caregivers, physicians and the right to die, and what is death and who decides.

FEDERAL LEGISLATION AND POLICY

The 11th hour budget deal struck by Congress and the White House contained a number of health system provisions that have elicited expressions of approval (and surprise) among policy and advocacy sectors.

High on the Plus Side Support for care for people with chronic illness: the budget act includes all provisions of the CHRONIC Care Act originally introduced in 2015 and supported by a bipartisan group of legislators. As reported by Modern Health’s Harris Meyer, the legislation “includes a variety of provisions to provide quality care in patients’ homes, enhance access to team-based care, launch innovations in benefit design and access to technology (including telehealth), and expand value-based payment for the chronically population. Some of the provisions apply to traditional Medicare, some to private Medicare Advantage plans, and some to both. The Commonwealth Fund’s David Blumenthal observed that the legislation “will improve the ability of the Medicare program to care for the sickest Americans, including the 5% of Medicare beneficiaries who account for 50% of spending—with an important emphasis on delivering home and community-based care. Perhaps the most important provision of the CHRONIC Care Act increases the flexibility of Medicare managed care plans (known as Medicare Advantage) to offer a wider array of supplemental benefits to chronically ill enrollees beginning in 2020. The supplemental benefits will not be limited to primarily health-related services and may enable Medicare Advantage plans to meet non-clinical needs, such as transportation, food, and housing. These are often as important as medical illnesses in undermining beneficiaries’ health and running up Medicare’s medical bills.” The law’s nod to Medicare Advantage, however, drew a rebuke from the Center for Medicare Advocacy: “This approach is unfair for the majority of Medicare beneficiaries, who are in traditional Medicare. While there are some provisions that extend coverage within Accountable Care Organizations, which are outside the MA program, we urge policymakers to expand services and coverage equally for all Medicare beneficiaries including those in traditional Medicare.” Repeal of Medicare outpatient therapy caps (see photo discussion below). A 10-year extension of the Children’s Health Insurance Program (CHIP), which will assure stability and efficiency for states providing medical services to eligible families. Two-year funding for community health centers to continue to provide community-based, comprehensive health services to medically underserved populations. Expansion of the successful Independence At Home demonstration program to help seniors access quality, team-based care side in the home. One major omission in the package was any move to address the problems of the Obamacare exchanges brought on by the year-long Republican drive to repeal the ACA. Hope remains, however, that some fix, most likely involving support for state reinsurance systems, will emerge in the next chapter of the budget battle set to resume in March.

2018 ACA Open Enrollment Numbers In the midst of the budgetary activity, three sets of statistics highlighted aspects of the ongoing U.S. health system debates. First, final enrollment figures for Obamacare plans for 2018 led the Associated Press to write : “Call it the political equivalent of a death-defying escape: former Pres. Obama’s healthcare law pulled in nearly 11.8 million customers for 2018 despite the Republican campaign to erase it from the books. Sixteen states increased enrollment from last year; six of those were carried by President Trump in 2016, while 10 went for Hillary Clinton. However, of the total number of people signed up this year, about six in 10 states went for Trump.”

ACA’s Financial Penalty Repeal At the same time, latest CMS projections, reported Modern Healthcare’s Virgil Dickson, “indicate that nearly eight million people will voluntarily lose insurance in the next eight years as a result of the repeal of the Affordable Care Act’s financial penalty for not having health insurance. In all 37.7 million people will be uninsured by 2026, up from the estimated 30 million in 2018, according to the CMS actuarial analysis.” The findings, Dickson continued, differ from the Congressional Budget Office’s earlier, less rosy forecast of 13 million additional uninsured by 2026.

Out-of-Pocket Costs for People on Traditional Medicare As for Medicare beneficiaries, the Kaiser Family Foundation had some sobering news. The Foundation’s report—Medicare Beneficiaries Out-of-Pocket Healthcare Spending as a Share of Income Now and Projections for the Future—“finds that more than one third of people with traditional Medicare spent at least 20% of their total income on out-of-pocket healthcare costs in 2013. While some people with Medicare face relatively low out-of-pocket costs, the financial burden can be especially large for beneficiaries with modest incomes and significant medical needs. For instance, among beneficiaries in traditional Medicare, just over half with incomes below $20,000 and those ages 85 and over spent at least 20% of the total income on health expenditures in 2013, along with more than four in 10 beneficiaries in fair or poor health status. The analysis projects that the healthcare spending burden among Medicare beneficiaries will rise over time. By 2030, under current policies, 42% of people with traditional Medicare will likely spend 20% of the total income or more on health care costs. Among all people with Medicare, out-of-pocket costs are projected to consume half of the average per-person Social Security benefit by 2030.”

Home Care Coverage: A Struggle for Individuals The Center for Medicare Advocacy has been keeping close tabs on Medicare’s home health benefit in the wake of what it sees are threats to its accessibility. “We fear Medicare coverage laws are not being enforced and people are not getting the care that they need in order to stay in their homes,” CMA attorney Kathleen Holt told Kaiser Health News’ Susan Jaffe. Jaffe highlights the difficulties confronting individuals seeking home care coverage, pointing out that home health agencies are too often prone to cut or avoid high cost, long-term aid recipients for fear of jeopardizing quality ratings based upon home care patients’ improvement.

Permanent Repeal of Medicare Caps for Outpatient Physical, Speech, and Occupational Therapy One bit of very good news, CMA noted , did come by way of the budget law’s permanent repeal of Medicare outpatient physical, speech, and occupational therapy caps. Previously Medicare beneficiaries were often left with uncertainty as Congress frequently wrestled with extending the exceptions process over the last 20 years, as was the case this year when the exceptions process expired on December 31, 2017. Nevertheless, CMA argues, Medicare payment policies (the home health perspective payment system and the home health value based purchasing model), aggressive fraud investigations, and aspects of the home health quality reporting system are still operating “to accelerate barriers to home health care for people with long-term and chronic conditions. CMS must properly effectuate coverage laws and create an environment through revised payment models, quality measures, and fraud policies that encourage agencies to provide care equally for all who qualify under Medicare law.”

Seema Verma on Medicaid Work Requirements The spotlight continues to shine on Medicaid and the intense debate over its future evolution. CMS administrator Seema Verma took to the Washington Post’s op-ed page to reiterate her position on what that future should entail. “Our nation should always care for Americans most in need,” Verma stated. “As such, we must allow states, who know the unique needs of their citizens, to design programs that don’t merely provide a Medicaid card but provide care that allows people to rise out of poverty and no longer need public assistance. Today, 11 states represented by governors of both major political parties have submitted proposals to implement work and community engagement requirements for non-disabled, working age populations. We applaud their efforts to strengthen the Medicaid program and are supportive of testing approaches to end poverty and improve outcomes.”

Adding Bureaucracy to Attack Medicaid Kentucky has become the epicenter of the Medicaid waiver debate with its now approved request involving work requirements and other checks on Medicaid eligibility promptly and prompting a lawsuit challenging the legality of the changes. As Helaine Olen put it in another Post op-ed , “the work requirements, several states’ proposed lifetime limits on benefits and premium charges for recipients should be understood as using bureaucracy to facilitate a backdoor attack on Medicaid. Medicaid lifetime limits and work requirements also function as cloaked attacks on the concept of universal health coverage. Medicaid functions as a guarantee of health coverage for people who don’t have employer-provided insurance, as well as the poor and working-class. Proposed limits throw more obstacles in the path of that idea, since at some point they will likely leave many without even that baseline access to have coverage.”

Oregon Expands Health Care Coverage Throughout it all, however, votes in Oregon have continued to demonstrate that state’s ongoing support for expanded health care coverage. First, in January a special election provided strong endorsement for raising healthcare company taxes to help cover the cost of Oregon’s Medicaid program. And, while controversial and supported only by Democrats, Oregon’s House voted in early February to ask Oregonians in November to embed a universal right to healthcare in the state constitution.

Webinar From Insight to Advocacy: Addressing Family Caregiving as a Public Health Issue Report The National Alliance for Caregiving will host a webinar March 6 at 2 p.m. (ET) to discuss its recently released report From Insight to Advocacy: Addressing Family Caregiving as a National Public Health Issue. The report urges establishment of policies that reflect the ever growing impact of caregiving burdens on the overall health of the entire population. Registration information is available here .

RESEARCH AND RESOURCES

Proposal Addresses Burdens of Long-Term Care From the University of Massachusetts Boston, Georgetown University, and the Urban Institute comes a detailed proposal for addressing Americans’ crushing long-term care financial burdens. Healthcare experts Marc Cohen, Judith Feder, and Melissa Favreault urge creation of a mechanism combining “public catastrophic insurance (protection after a waiting period) with gap-filling long-term services and supports (LTSS) insurance to promote comprehensive insurance protection.” The combined system, phased in over a ten-year period and financed in part by a 1% increase in the Medicare tax would,” the authors argue, “increase overall spending by 14% and offset current spending by a roughly equivalent amount. It is also projected to reduce Medicaid spending by 23% and out-of-pocket spending by 15% relative to current financing. Family caregivers and direct beneficiaries would have benefit from more paid services, reductions in unmet need, and reductions in the burdens associated with family provided hands-on caregiving. Previous research shows that even in the presence of significant insurance-financed benefits, families continue to contribute significant effort to caregiving but shift their focus to companionship and assistance with instrumental activities of daily living. This suggests that family care is not a perfect substitute for paid care and that in the presence of insurance-financed benefits, disabled individual receiving care will experience a net welfare gain, likely at the same time that the caregivers will experience a reduction in the costs associated with workforce accommodations.”

Proposal Addresses Burdens of Long-Term Care “What if, instead of being admitted and receiving care in a hospital, a patient could be cared for at home, and monitored using cutting-edge technology?” Boston’s Brigham and Women’s Hospital set out to answer that question in a path-breaking pilot study , randomized and controlled, that tested the home hospital model in the U.S. and its impact on direct costs as well as utilization, safety, quality, and patient experience. “Patients who were cared for at home received a daily visit from an attending general internist and two daily visits from a home health registered nurse. The home hospital model also offered 24-hour physician coverage and cutting edge connectivity, including continuous monitoring, video, and texting. The team found that the average direct cost for acute care episodes for patients was up to half of the cost of the control patients cared for in the hospital. The pilot study’s primary outcome was direct cost but the researchers also looked at other, secondary measures. They found that the home hospital model also decreased utilization and improved physical activity, without appreciably changing quality, safety, or patient experience. The home hospital model delivers care in a more patient centered manner,” study director Dr. David Levine observed. “Patients can be surrounded by the family and friends, enjoy their own food, move around in their own home, and sleep in her own bed, with the support of the hospital team.”

News in Palliative Care Palliative care receives considerable attention and material including the current development of new consensus clinical practice guidelines for quality palliative care, a prospective study of nursing home resident palliative care needs, and a look at the historic role of Palliative Care Leadership Centers in promoting innovation, dissemination, and professionalization in the palliative care field: Summer 2018 is the expected release date for the fourth edition of the National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care. The National Coalition for Hospice and Palliative Care has created a website containing extensive resource material regarding the ongoing drafting project, including slides, FAQs, and preparatory conference presentations. From UCSF nursing professor Caroline Stephens comes a study assessing unmet palliative care needs in nursing homes. Dr. Stephens discusses her findings in a lengthy GeriPal podcast. As clinicians, Dr. Stevens stated, “it’s really important to understand who a nursing home individual was prior to developing dementia, or having serious illness take over, as well as helping families understand what it is that their loved one would want if able to step back and look at the current situation. Further, we must understand the trajectory of the illness and its prognosis, and how best the individual can be supported, including making sure that we are managing symptoms properly. Thirdly we should recognize that the POLST (Physician’s Orders for Life Sustaining Treatment) is not the end-all and be-all in terms of being completed, that it’s a process and not just a checkbox.” Finally, six palliative care experts turned to the pages of Health Affairs to analyze the significant impact of the Center to Advance Palliative Care (CAPC) on the emergence of widespread hospital palliative care services. In 2000, the researchers observed, “only 24.5% of U.S. hospitals with 50 beds reported having palliative care teams. But within 15 years palliative care services were in place at 75% of the hospitals of that size, and more than 90% of hospitals with more than 300 beds, and at 100% of the National Cancer Institute’s comprehensive cancer centers. Such rapid adoption of these services, the researchers conclude, can be tied directly to the dissemination efforts of CAPC’s Palliative Care Leadership Centers.

Review of Medicaid Home and Community-Based Services Kaiser Family Foundation and Watts Health Policy Consulting have released a comprehensive 50-state review of Medicaid-covered home and community-based services covering enrollment and spending trends between 2004 and 2014, along with state HCBS policies as of 2016. The data, the authors summarize, indicate that 1) nearly 3.2 million people received HCBS through one of the three main Medicaid programs in 2014, a 5% increase from the prior year; 2) the overall increase from across the three main CPS programs from 2013 to 2014 was notable as many states also experienced enrollment increases from implementing the ACA’s Medicaid expansion in 2014; 3) total Medicaid spending on HCBS across the three programs was $58.5 billion in 2014, an increase of 3% from the prior year; and 4) HCBS spending per enrollee averaged $18,458 nationally in 2014, with substantial state-level variation.

Voluntary Bundled Payment for Patients with Heart Failure Proves Beneficial The use of bundled Medicare payments for a number of clinical conditions has undergone changes in design and implementation since the advent of the Trump Administration, but, as Modern Healthcare’s Harris Meyer reports , for one Cleveland area hospital, adoption of a voluntary bundled payment for heart failure patients has produced impressive benefits. “Since launching its program in 2015, Southwest General Hospital has earned nearly $800,000 in savings payments from the CMS. Its readmission rate for CHF patients within 90 days has declined by 20%. And patient satisfaction scores from these patients have soared by 30%. The experience has emboldened Southwest General to consider expanding into Medicare bundles for other clinical conditions and to discuss bundled payment arrangements with private insurers. Hospital cardiologist Dr. Touraj Taghizadeh, who became the program’s physician champion, told Meyer that ‘one of the toughest challenges was convincing independent primary care physicians and cardiologists to schedule follow-up visits with CHF patients within seven days after hospital discharge. That’s critical for quickly addressing patient care issues such as reconciling medications and improving diet. It’s a whole new way to practice, and it takes a while. We physicians don’t like change.’”

Living Alone with Cognitive Impairment Researchers from several major academic aging centers have documented what they term the Precarity of Older Adults Living Alone with Cognitive Impairment. Focusing on 12 adults, 65 and older, six with Alzheimer’s disease and six with mild cognitive impairment, the study authors describe three distinct “themes” that contribute to the subjects’ precarity: the self-awareness of impairment, the attempts to self-manage the challenges brought on by impairment, and the lack of tailored services for those impaired and living alone.

Assisted-Living Facilities and Nursing Homes Under Scrutiny From GAO and HRW Conditions affecting residents of Medicaid supported assisted-living facilities and nursing homes have come under critical scrutiny from two oversight bodies, the Government Accountability Office, in the case of assisted living, and Human Rights Watch, with respect to nursing facilities. “The federal government, according to GAO ,” The New York Times’ Robert Pear reported , “lacks even basic information about the quality of assisted living services provided to low-income people on Medicaid. Billions of dollars in government spending is flowing to the industry even as it operates under a patchwork of vague standards and limited supervision by federal and state authorities. States reported spending more than $10 billion a year in federal and state funds for assisted living services for more than 330,000 Medicaid beneficiaries, an average of $30,000 a person. States are supposed to keep track of cases involving the abuse, neglect, exploitation, or unexplained death of Medicaid beneficiaries in assisted-living facilities. But more than half of the states were unable to provide information on the number or nature of such cases. Just 22 states were able to provide data on ‘critical incidents’–cases of potential or actual harm. In one year those states reported a total of more than 22,900 incidents, including the physical, emotional, or sexual abuse of residents.” For its part Human Rights Watch has taken aim at the use of antipsychotic drugs in nursing homes, finding that despite efforts to curb their use in recent years significant overuse persists. The 157-page HRW report estimates and “every week in U.S. nursing facilities, more than 179,000 people, mostly older and living with dementia, are given antipsychotic drugs without an appropriate diagnosis. Facilities administer these drugs in many cases without obtaining informed consent from residents or their families. Using antipsychotic medications as a ‘chemical restraint’–for the convenience of staff or to discipline residents—violates federal regulations and can amount to cruel, inhuman, or degrading treatment under international human rights law. Yet even when nursing homes are found to have broken these rules, they are rarely punished.”

Nursing Homes Improve Outcomes with Data Analysis Amid reports of long-term care oversight deficiencies, one example of heartening progress appeared in reporter Jeff Lagasse’s account of two Connecticut nursing homes’ impressive move into the digital age. “For two years now the facilities have been using RealTime medical systems. Essentially a platform that sits on top of their electronic medical records, RealTime analyzes 150 clinical data fields, provides recommended interventions, and consolidates the data into a single report. It gives the facilities a fresh report each day at one minute after midnight. Now—the facilities report—staff do not have to wait until the electronic medical records data set pinpoints a trend that’s happening. That has improved clinical quality, which in turn has resulted in fewer patients needing hospital readmission. In addition, the Connecticut facilities have been using Providigm’s Abaqis, a quality management system, distributed by Medline, that helps identify potential deficiencies in advance of state surveyors’ visits. It’s already paying off. By the time surveyors come in, the two facilities have typically already corrected any issues that might have been found.”

Direction for Individuals With Complex Medical Needs in Report From Bipartisan Policy Center Building upon a multiyear series of reports the Bipartisan Policy Center has issued a final Policy Roadmap for Individuals with Complex Medical Needs. The 37-page report contains a lengthy list of recommendations aimed at improving the delivery of clinical services and long-term services and supports for the vast number of Americans with one or more chronic conditions whose care costs 86% of the $3.3 trillion in U.S. health expenditures. Among the recommendations are a number that address support for family caregivers: 1) keep workers who also need to provide care in the labor force; 2) keep care recipients in their homes; 3) increase the quality of care for people with disabilities and increase self-direction of care by beneficiaries and their families; and 4) protect caregivers financially during the periods of caregiving or at least limit their financial losses, especially if they are economically vulnerable.

Wasteful Healthcare Spending “Unnecessary” and “wasteful” are constantly recurring characteristics applied to large percentages of American healthcare spending. As Harvard health economist David Cutler puts it in a recent Health Affairs blog post , “waste in medical care comes in many forms. One clear cause is misallocated treatments: spending on care that is not clinically valuable or not spending on preventive services. Wasteful treatment includes recurrent use of emergency departments and hospitalizations for people with inadequately treated congestive heart failure. High prices are a second form of wasteful spending; prices for the same services vary greatly across the country and between the U.S. and other countries. A third form of wasteful spending lies in excessive administrative costs. About one quarter of U.S. medical spending is estimated to be spent on these costs–twice what is spent on cardiovascular disease, and three times what is spent on cancer. Finally fraud and abuse may account for up to 10% of cost for some payers, though the exact amount is difficult to know.”

Washington State Quantifies Wasteful Healthcare Spending The latest attempt to quantify the problem of wasteful and unnecessary healthcare expenditures comes from the state of Washington where the Washington Health Alliance—using Milliman’s Medinsight analytical tools and applying overuse examples from the Choosing Wisely campaign and the U.S. Preventive Services Task Force—has concluded that out of a total of approximately 1.3 million individuals receiving services between 2015 and 2016, 47.9% received low value services that amounted to 36% or $282 million of the total estimated healthcare expenditures in Washington of $785 million.

State Guardianship Laws: New Materials The National Center on Law & Elder Rights highlights important new materials regarding state guardianship laws, one from the American Bar Association surveying 2017 state legislative actions, and the second a guide to the recently revised and approved Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act.

MEDIA WATCH

FMLA at 25: Momentum Growing to Expand February marks the 25th anniversary of the Family and Medical Leave Act (FMLA), but as Forbes contributor Diane Harris noted in her review of the law’s content and impact, “the biggest cause for celebration is not for what the law has accomplished over the past quarter century, but rather what may come next. “Momentum is clearly growing among policymakers and employers for an expansion of the law that will include paid leave,” AARP’s senior policy advisor Lynn Friss Feinberg told Harris. “By 2024, nearly one in four people in the labor force will be age 55 and older, including midlife and older women more likely to take on a caregiving role. More people in C-suites are being personally affected by caregiving challenges too, and that will help drive awareness of the need for paid leave policies across the lifespan of working families.”

Skepticism Over Administration’s Medicaid Waiver Requests President Obama’s point man on state Medicaid waiver requests, Eliott Fishman, has joined the vigorous debate over recent Medicaid waiver pronouncements and decisions. In a Health Affairs blog post—Will Federal Courts Uphold Trump Administration Medicaid Waiver Approvals? The Case for Skepticism—Fishman analyzes the possible outcome of the court challenges that followed immediately after approval of work requirements and other restrictive changes requested by Kentucky and Indiana. “It is important,” Fishman observes,“to note the reason there have been few of these legal Medicaid challenges: until 2018, over its 50+ year history, Medicaid waiver authority was almost exclusively used to expand Medicaid eligibility and benefits rather than to restrict them, or to try a different approach to delivering existing benefits. The approvals in Kentucky and Indiana, and possible pending approvals in other states, base their claim to be promoting the objectives of the Medicaid program on a brazen and cynical premise. The waiver approvals assert that taking away Medicaid from statutorily eligible individuals can act as an incentive that ultimately improves health: either by forcing the beneficiary to get a job to stay insured in the case of work requirements, or by ‘educating beneficiaries on enrollment requirements’ in the case of lockouts from eligibility for beneficiaries who fail to complete a renewal form or inform the state of income changes. Because the hypothesized Medicaid objectives are so dubious, a lot more than the specific waiver requests rests on the plaintiffs’ case in the waivered states. At risk are not only specific Medicaid eligibility principles, but the entire statutory enterprise of congressional legislation of mandatory Medicaid eligibility or benefits of any kind.”

Surgery and Healing in Germany As discussed in this issues Research and Resources section, the subject of wasteful healthcare spending in the U.S. generates ongoing analysis and handwringing. For one American woman facing a hysterectomy in Germany, the issue could be said to have become personalized after her clinical experience with that nation’s health delivery approach. Writing in The New York Times, Firoozeh Dumas recounts her determination to receive painkillers after her laparoscopic surgery. German doctors were not persuaded. “If I give you Vicodin,” her German physician told her, “you will no longer feel the pain, yes, but you will no longer know what your body is telling you. You might overexert yourself because you are no longer feeling the pain signals. All you need is rest. And please be careful with ibuprofen. It’s not good for your kidneys. Your body will heal itself with rest.” “I bring a lot of medicine with me from the United States,” Dumas writes, “all over-the-counter, all intended to take away discomfort. The German doctors were telling me that to be uncomfortable is okay.” So Dumas, worried and fearful, went home shortly after the procedure. “Every day my body felt a little better. I drank mint tea. I drank fennel tea. I drank coffee slowly, enjoying every sip. After a week I took the tram to the doctor’s office to have my stitches removed. My doctor, with her usual cup of chamomile tea in hand, remarked on my progress. I rested, I told her. Normally I would’ve said I did nothing, but I didn’t say that; I had been healing and that’s something. Let me add,” Dumas concluded, “that this hysterectomy was not without cost. After my surgery I had to pay $25 for the taxi ride home.”

Heart Stents: Expensive Placebo Effect for Many Overuse of medical interventions comes in a variety of situations; one of them, as Aaron E. Carroll argues in The New York Times, pertains to the insertion of stents in stable coronary patients. “Lots of Americans,” Carroll writes, have chest pain because of a lack of blood and oxygen reaching the heart. For decades, one of the most common ways to treat this was to insert a mesh tube known as a stent into arteries supplying the heart. The stents held the vessels open and increased blood flow to the heart, theoretically fixing the problem. Cardiologist who inserted the stents found that the patients reported feeling better. They seemed to be healthier. Many believed that the stents prevented heart attacks and maybe even death. Then in 2007, a randomized controlled trial was published in the New England Journal of Medicine. The main outcomes of interest were heart attacks and death. Researchers gathered almost 2300 patients with significant coronary heart disease and proof of reduced blood flow to the heart. They assigned randomly to a stent with medical therapy or to medical therapy alone. They followed the patients for years. The result? The stents didn’t make a difference beyond medical treatment in preventing these bad outcomes.”

When You Need It, Who Will Be Your Caregiver? Who will care for you when you’re old? Two articles address this fraught and daunting question by focusing on the plights of paid caregivers. Bloomberg BusinessWeek’s E. Tammy Kim portrays in graphic detail the difficult life of Ridgewood, N.Y., caregiver Valia, a Ukrainian immigrant, as she tends to the needs of an elderly, low-income woman with advanced Alzheimer’s disease. “Her shift would begin at 8 a.m. and end at 8 a.m. two days later—a schedule that recently compelled Valia to sue her employer, a private home health agency. Forty eight hours stuck in a cramped bedroom with someone in constant distress, who yelled strings of Russian words, who was incontinent and unable to sleep, who was lost in her own timeless world. Over two days she would work more than most full-time employees do in a week, yet her pay stub would account for only 26 of the 48 hours, at $10 per hour. This was arguably legal, because the law—and her employer—assume that she slept and ate the rest of the time. ‘Tell me another job where you have to work for free throughout the night,’ Valia said, ‘It doesn’t exist.’ No country,” Kim writes, “has gotten it quite right, but in aging societies around the world, the public sector has proved indispensable. Yet the world over, family caregivers and private aides fill untold hours of needed service. Valia, who sees her lawsuit as an attempt to bring order to this labor and to the home healthcare industry at large, speaks empathetically of her client’s predicament and the value of getting care at home ‘My husband was in a nursing home. They sit you on a couch you stay like that all day. You have to live with everyone else. But at home, you’re in control. If you want to sleep you can sleep. If you want to eat fish, you can eat fish. I prefer to stay home. Everyone would.’” Meanwhile in Dallas, Texas, as The New York Times columnist Paula Span writes , “a 93-year-old is worried about the woman who, for years, has come to her house four days a week to help with shopping, laundry, housecleaning and driving. Because her helper is an undocumented immigrant from Mexico, both women increasingly fear that she’ll be detained and deported. Providing care for older people, in their homes or facilities, has become the classic example of a job native-born Americans would rather not take. It’s physically demanding work that pays poorly. The number of immigrants in direct care ballooned from 520,000 in 2005 to approximately 1 million in 2015, including those who work independently through state home health care programs. In New York, California, New Jersey and Florida, more than 40% of direct care workers are immigrants. ‘If large numbers of immigrants become unable to work or fearful of attracting unwanted attention, this is going to create tremendous strain,’ veteran long-term care policy expert Robyn Stone told Span. ‘Already we’ve heard of nursing homes that have shut down or stopped admissions because they could not hire enough people.’”

Medical Aid in Dying or Life Support: Who Decides? Two articles attest to the intensity of the legal and political battles concerning end-of-life care and the right of terminally ill patients to end their lives. Kaiser Health News’ Melissa Bailey reports on emerging shifts in physician opposition to right to die laws, while opponents of the shift, including the American Medical Association and Catholic religious leaders, show no sign of changing their positions. “In December 2017 the Massachusetts Medical Society became the 10th chapter of the AMA to drop its opposition and take a neutral stance on medical aid in dying. The California Medical Association was the first such association in the nation to end its opposition to physician aid in dying, in 2015. Today such aid is legal in California, Colorado, Washington, Oregon, Vermont, and Montana. California’s law which took effect in June 2016, allows terminal ill adults who are mentally capable and have six months or less to live to request a prescription for medication to end their lives. In June 2017 Compassion and Choices, an advocacy group that supports legalization efforts around the country, reported prescriptions for medications had been written for at least 504 Californians within the law’s first year. The organization also reported that almost 500 hospitals and health systems were participating.” Caregiving Policy Digest readers last heard from the New Yorker’s Rachel Aviv when she wrote about the distressing application of the adult guardianship process in Nevada. Her latest piece , a harrowing journey into the lives of a mother and daughter—the daughter lying unresponsive after a botched post-tonsillectomy response to a bleeding crisis, the mother fighting on and on to prevent her daughter from being taken off life support—presents in agonizing prose the dilemmas of determining whether someone is alive or dead and whether the bonds of maternal devotion can bear any limits. Aviv chronicles the saga of Jahi McMath from her December 2013 postsurgical awaking at age 13 in an Oakland, California, hospital to her present seemingly brain-dead existence in a New Jersey hospital bed. Along the way Aviv delves deeply into the history of death determination criteria, from cardiorespiratory failure to brain death—presenting the views of a host of experts in clinical and bioethical disciplines. As for Jahi’s mother, Nailah Winkfield, “nearly every day she asks Jahi, ‘are you okay with what I’m doing? Do you want to live? Are you suffering? If Jahi has given up and doesn’t want to be here anymore, I’m just going to go with what she wants.’ Nailah said that Jahi answers the questions by either squeezing her hand or pressing her own index finger toward her thumb, a signal for ‘yes’ Nailah taught her.”

FAMILY CAREGIVER ALLIANCE ANNOUNCEMENTS

Free Webinar Five Tips for Improving a Difficult Caregiving Day FCA invites your participation in a free webinar focusing on Five Tips for Improving a Difficult Caregiving Day. The speaker, Lindsey Vajpeyi, has extensive experience counseling persons living with dementia and their caregivers, with a focus on improving quality of life for all affected by dementia. When: Wednesday, February 28, 11 a.m. to 12 p.m. (PT). Registration: Click here

Family Caregivers Are You Willing to Speak to the Media? FCA regularly receives requests from the media (print, online, video and film) to speak with, or interview, family caregivers. Requests may include how caregivers are able to afford and manage their caregiving responsibilities to the challenges faced caring for a family member or friend with dementia or chronic health condition. Do you know a family caregiver, or are you caregiving? Would you like to tell your story? Fill out our online form and let us know if we can pass your name along when we get a matching request. Thank you.

FCA/NCC TWEETS

Follow Family Caregiver Alliance / National Center on Caregiving @CaregiverAlly and Executive Director Kathleen Kelly @KKellyFCA.

FCA/NCC RESEARCH REGISTRY

Professional Studies

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The Effects of Caregiver Stress on Symptoms of Depression (ECSSD) Doctor of Ministry Research Family Care Partners of Chronically Ill Older Adults Compensated Interview with Cancer patients, survivors and caregivers

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CREDITS Contributing to Caregiving Policy Digest are Alan K. Kaplan, attorney and health policy consultant, Kathleen Kelly, and Francesca Pera (editing and layout). Send your feedback and/or questions to policy_digest@caregiver.org .

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