Vol. 18, No. 5
May 31, 2018

In This Issue: Obamacare repeal redux, the search for health care cost reduction, Virginia says yes to Medicaid, the Medicaid wars, continued, Medicare private patient-phyician contracting, the “right to try,” greater nursing shortages forecast, elder abuse in Minnesota, telemedicine expands its wings, hospital patient safety grades, contaminated scopes, ER accreditation, nursing home resident-staff interaction, Millennials as caregivers, home health coverage, Longevity Explorers welcome caregivers, the case for TEEs, the death definition debate, senior bullies, ER insurance rejections, wheelchairs in assisted living, and the future of primary care
Another GOP Push to End Obamacare Expected in June
Healthcare advocacy groups: start your engines? Are we on the cusp of yet another GOP push to totally repeal Obamacare? Perhaps, according to Wall Street Journal reporters Stephanie Armour and Siobhan Hughes. “A group of Republicans and advocacy groups will soon release a proposal intended to spark another push to repeal the Affordable Care Act,” they write , “resurrecting a potentially volatile issue in the months before the November midterm elections. A group of think tanks—including policy experts from the Heritage Foundation, American Enterprise Institute, Galen Institute, and Manhattan Institute—plan to release a proposal in June. Backers hope for legislative action on the proposal, which builds on a bill offered last year by Senators Lindsey Graham and Bill Cassidy by the end of August.” The effort, the reporters point out, is definitely a long shot, with the GOP’s Senate majority one vote less since the last repeal push ended in defeat. For his part Senate Majority Leader Mitch McConnell is showing no interest at the present time in renewing the repeal fight.
Cost of Healthcare Weighs Heavily on Both Parties in the Lead up to November
At the same time, the focus of political debate and rhetoric regarding health care has shifted to the cost issue. In the wake of the demise of the Obamacare individual mandate and the Trump Administration’s support for so-called “skinny” insurance plans, concerns over their impact on consumer wallets is weighing heavily on both parties’ candidates for the November elections. Such concern appeared to spark a startling observation from former HHS Secretary Tom Price, long one of Obamacare’s most caustic critics: “There are many, I am one of them,” Modern Healthcare’s Virgil Dixon quoted Price speaking at a conference, “that actually believe that zeroing out the penalty for failing to comply with the individual mandate will harm the risk pool in the exchange market. Younger and healthier people may now not participate in that market and consequently that drives up the costs for other folks.” Senator Patty Murray lost no time responding: “I’m glad to see former Secretary Price admit the truth, which is that families’ premiums are going up because President Trump and Republicans in Congress have spiked prices with their relentless, partisan healthcare sabotage.” Senator Claire McCaskill, writes Modern Healthcare’s Susannah Luthi, considered one of the most vulnerable incumbent senators up for November reelection “said she sees the country at a ‘breaking point’ when it comes to healthcare prices and she is looking for opportunities to push through gridlock with smaller efforts that get at wider anxiety. ‘I don’t know and don’t care how quote-unquote Democrats should be addressing healthcare. I know how I’m going to address healthcare as the most important issue facing Missourians in terms of their anxiety and worry about their co-pays, deductibles, and the cost of medicine particularly.’ McCaskill noted that when it comes to anxiety she is not only talking about the exchanges. ‘It’s really, frankly, also for people getting insurance at work, it’s for people who are on Medicare. I don’t think enough people around here realize how worried and stressed people in this country are about this.’”
Medicaid Expansion in Virginia
At last; that’s how Virginia Democrats and some Republicans must feel after their state legislature, overcoming five years of resistance, voted to become the 33rd state to expand its Medicaid program. In the end, it took inclusion of a controversial work requirement for the legislation to win over crucial Republican votes, but supporters expect the measure to extend Medicaid coverage to as many as 400,000 Virginians.
CMS Says ‘No’ to Medicaid Lifetime Limits and Expresses Concern Over Work Requirements and Eligibility
Meanwhile, with prospects for another bout of Obamacare repeal efforts remaining in the realm of speculation, the present reality of Medicaid restructuring continues to provoke contentious debate over its direction. For her part, CMS Administrator Seema Verma established one limitation on the administration support for state waiver requests: no lifetime limits. As reported by MedPage Today’s Joyce Frieden, “What we have approved,” said Verma, “is temporary lapses in coverage, so an individual may not comply with, for example, a requirement around cost-sharing and potentially lose coverage, but we want to make sure there’s a pathway back into the program. When CMS recently turned down Kansas’s request for a three-year lifetime limit for its Medicaid recipients, we indicated we would not approve lifetime limits, and we have made that pretty clear to states.”

Verma also expressed concern, as reported by Modern Healthcare’s Virgil Dixon, about the possibility of states’ work requirement proposals creating a “subsidy cliff” whereby a person earns enough money to lose Medicaid eligibility, but doesn’t make enough to qualify for financial assistance on the individual insurance exchanges, thus being left without any coverage. “Because there is no tax credit to move on to the exchanges, what happens to such individuals,” Verma asked. “We need to figure out a pathway, a bridge to self-sufficiency.”
Advocacy Groups Question HSS Evaluation of Medicaid Demonstration Waivers
For 75 advocacy groups, however, the concerns about Medicaid’s future are much wider. Writing to HHS Secretary Alex Azar, the groups urged the department to institute vigorous Medicaid demonstration waiver evaluations before granting any further Section 1115 requests. “CMS,” the organizations write, “is now introducing unprecedented restrictions to the Medicaid program using the demonstration waiver authority. Whether these waivers are allowable under federal law is a question pending in the federal courts. To undertake these waivers without the basic capacity for federal evaluation evinces a disregard for the HHS role in overseeing the Medicaid program as Congress has enacted it. In the past, HHS actions have followed the basic Social Security Act requirements, requiring the waivers be experimental, likely to promote Medicaid’s objectives, and focused on ensuring that taxpayer dollars are used wisely. The recent radical scaling back of the federal evaluation of Indiana’s HIP 2.0 demonstration is, in and of itself, a grave abdication, involving both the state of Indiana and CMS, of an obligation to carefully examine the impact of premiums and locks on its very low-income Medicaid beneficiaries.”
Medicare Proposal to Allow Private Physician-Patient Contracting: A Two-Tiered System
Amid the ongoing Medicaid controversies, the Administration is beginning to sift through comments it solicited concerning a proposal to allow private physician-patient contracting in the Medicare program. Pro and con arguments have emerged from various Medicare stakeholders. Currently, Recycle Intelligence reporter Jacqueline Belliveau writes , “providers must opt out of Medicare for two years if they enter private contracts to deliver covered services to Medicare beneficiaries. Providers opting out do not receive reimbursement for any covered services delivered to Medicare beneficiaries, but they do get to bill patients at different rates. The proposed direct provider contracting model would change that. If patients decide to participate in a direct provider contracting model, CMS would then contract with Medicare providers and suppliers who agree to be held accountable for the cost and quality of a defined Medicare beneficiary group.” Support for the proposal came, for example, from the Alliance of Specialty Medicine, which urged CMS to allow physicians of Medicare beneficiaries to develop private contracts on a case-by-case basis. “Medicare beneficiaries should not be prevented from using their Medicare benefits if they choose to see a physician who does not accept Medicare, and physicians should not face penalties or be forced to ‘opt out’ of the Medicare program to contract with Medicare beneficiaries privately. At the same time we recognize that not every Medicare beneficiary will choose to exercise the right to contract privately, and in some cases, private contracting may be inappropriate.” For AARP, however, the dangers of such arrangements are all to plain. “Medicare’s rules for balance billing and private contracting provide important financial protections for Medicare beneficiaries,” AARP argued. “Beneficiaries in traditional Medicare already spend about 18% of their income on premiums and other medical expenses. Without Medicare’s consumer protections, Medicare beneficiaries would face higher out-of-pocket costs from balance billing and private contracts.” Added Justice in Aging: a private contracting system would create “a two-tiered system where those who can afford greater costs have access to more providers, eroding support for the Medicare program overall.”
‘Right to Try’ Passed and Signed
A federal “right to try” is now the law of the land. The measure, passed by Congress and signed by President Trump, will, as reported by CNN’s Jacqueline Howard, “give terminally ill patients the right to seek drug treatments that remain in clinical trials and have passed phase 1 of the FDA’s approval process, but have not been fully approved by the FDA. “This is really a law for people who are very sick, who have exhausted all treatment options and who cannot enroll in a clinical trial,” said Starlee Coleman, senior advisor at the Goldwater Institute in Phoenix, Arizona. At the same time, opponents have argued that while the bill won’t change much, it could have a detrimental effect on how the FDA safeguards the health of the public. Dr. Steven Joffe, a University of Pennsylvania Medical School ethicist and health policy professor, argues in a recent New England Journal of Medicine article that “the right to try approach to providing access to unapproved drugs early in their development could put patients in harm’s way, as patients receiving the drug are often in very fragile health, doctors often lack the information needed to administer the drug safely, and little may be known about their risks and benefits.”
VA Mission Act of 2018 Expands Family Caregiver Program
The VA Mission Act of 2018 (HR 5674), signed into law by President Trump, includes an expanded VA Family Caregiver Program for veterans that will provide coverage for those who served prior to September 11, 2001. The program offers support for caregivers of eligible veterans, including access to health insurance, a financial stipend, caregiver training, mental health services, and respite care.
Nursing Shortage Expected to Worsen
A national survey documents a worrying trend that will impact patient care: a worsening shortage of nurses. A large majority of chief nursing officers say the nurse shortage at their organizations is moderate to severe, and most say this problem will become increasingly worse over the next five years, AMN Healthcare reports . CNCs see shortages negatively affecting some of the most important aspects of healthcare—patient satisfaction, quality, care, and staff morale. Recruitment of adequate numbers of quality nurses is facing significant roadblocks that may not be overcome by internal solutions alone at many healthcare organizations.
California’s End-of-Life Option Act on Hold
Physician aid-in-dying laws have received endorsement by seven states and the District of Columbia. But for residents of the largest such state, California, residents’ access to such assistance has been put on hold following a state District Court’s invalidation of the original enabling legislation, based upon the court’s finding of a state constitutional impediment. As of the end of May the matter remained unresolved. Writes Los Angeles Times reporter Soumya Karlamangla: “Things are up in the air. ‘Until and unless the law is reinstated by action of the court of appeal or California Supreme Court,’ said Stephen Larson, an attorney for those seeking the law’s overturn, ‘it has been ruled unconstitutional and is therefore void.’” Adds San Francisco Chronicle reporter Bob Egelko: “Because of the ruling, doctors can no longer prescribe life-ending medication to dying patients, and a patient who had already been provided with the medication would be committing suicide by taking it, with implications for insurance coverage. One such patient is Joan Nelson, 82, of Marin County, who has been diagnosed with leiomyosarcoma, a terminal cancer. ‘I am very troubled,’ Nelson said, ‘to learn that this court has made a ruling that could interfere with my ability to use my aid-in-dying medication when my suffering becomes unbearable.’”
Bipartisan Legislation in Minnesota to Improve Oversight of Long-Term Care Facilities
Amid growing concerns about elder abuse in Minnesota’s long-term care facilities, including assisted-living, AARP Minnesota and a coalition of family caregivers and consumer advocates are supporting bipartisan legislation, endorsed by Governor Mark Dayton, to improve both regulatory oversight by the state and the quality of care in nursing homes and assisted-living facilities. “Lapsed enforcement has created an environment where bad actors don’t have to feel the consequences,” AARP’s Minnesota director Will Phillips observed . “When the maximum fine is only $5,000 in cases involving serious harm, including death, facilities have little to fear. Equally troubling is that under Minnesota law, a civil claim or abuse dies when the patient dies, resulting in delays getting medical information and other information to pursue a claim. The stories of abuse are shocking. The fact that this is happening in Minnesota, a state that prides itself on being a leader in taking care of our elders, is beyond disturbing. We need real, bipartisan action to protect vulnerable adults in Minnesota, and we need it now.”
Family Caregiver ‘Explorer’ Opportunity
For the last two years a group of older adults (in their 60s, 70s, 80s, and 90s)—the Longevity Explorers—have been providing hands-on help to companies that are developing products to improve the lives of older adults, and they are getting compensated for their insights. The initiative’s creator, Dr. Richard Caro, is now inviting caregivers to join this community, taking part in their explorations and sharing caregiver perspectives. Interested individuals may seek an invitation to participate in the venture, either online or by sending an email to Dr. Caro at info@techenhancedlife.com . The Longevity Explorer project is part of Tech-enhanced Life , a rich web resource for seniors and family caregivers to discover the ever-expanding universe of technology to improve seniors’ daily lives and ease caregiving burdens.
Expect More Telemedicine
Telemedicine is showing increasing signs of expansion as mechanisms to pay for it are increasingly put into place. As Kaiser Health News Steven Findlay writes, “Tucked into the federal budget law Congress passed in February was a provision that significantly expands the use of telemedicine—now poised to go mainstream within five to 10 years. The new law allows Medicare to cover telemedicine services for people who have had a stroke and those who get kidney dialysis, either at home or in a dialysis facility. It also permits Medicare Advantage Plans to offer telemedicine as a covered benefit. Separately, as of January 1, Medicare began allowing doctors to bill the government for monitoring certain patients remotely using telemedicine tools: for example, tracking heart beat and rhythm, blood pressure and blood glucose levels. Health economists, meanwhile, are concerned that visits could add to costs rather than constrain them—if, for example, doctors and patients abuse visits by scheduling them unnecessarily because they are quick and easy. Also, insurers may be motivated to push doctors to do more e-visits instead of in-person visits to save money. And for some people, access to proper equipment or Internet access can be difficult. “The potential for abuse is there,” says Urban Institute Medicare expert Dr. Robert Berenson. “We will need to prevent gaming and misuse of the system but, generally, helping people avoid unnecessary doctor’s office and hospital visits is a good thing, if we do it right.”
Recent Hospital Safety Grades From the Leapfrog Group
Ensuring patient safety in interactions with the healthcare system remains an ongoing critical concern. The most recent hospital safety grades from the Leapfrog Group offer some good news in that regard, albeit while noting continuing deficiencies in approximately 40% of the 2,500 hospitals surveyed. The biannual grading assigns A,B,C,D and F letter grades to general acute care hospitals in the U.S., and is the nation’s only rating focused entirely on errors, accidents, injuries, and infections that collectively are the third leading cause of death in the United States. Signs of hospitals achieving improvements according to the latest report include: five A hospitals receiving this grade for the very first time this spring had an F grade in the past; 46 hospitals have achieved an A for the first time since the Leapfrog Hospital safety grade began six years ago; and 89 hospitals receiving an A at one point had received a D for F.
Medical Scopes Test Positive for Bacteria
A startling indication of the seriousness of the patient safety problem came in a report by Modern Healthcare’s Chad Terhune: “In an ominous sign for patient safety, 71% of reusable medical scopes deemed ready for use on patients tested positive for bacteria at three major U.S. hospitals, according to a new study. The paper, published recently in the American Journal of infection Control, underscores the infection risk posed by commonly used endoscopes. It signals a lack of progress by manufacturers, hospitals, and regulators in reducing contamination despite numerous reports of superbug outbreaks and patient deaths. About two million Americans are sickened by drug-resistant bacteria each year and 23,000 die, according to the Centers for Disease Control and Prevention. ‘We’re not moving fast enough to a safer world of reasonable medical devices,’ Massachusetts industry consultant Michael Drues commented. ‘There is plenty of fault to go around on device companies, hospitals, clinicians, on basically everybody.’”
New Steering Committee Formed to Reduce Patient Harm
Patient safety efforts are spawning a new, wide-ranging, 24-member steering committee led by the Institute for Healthcare Improvement and the Agency for Healthcare Research and Quality. Acting in response to a call for action from the National Patient Safety Foundation, the committee will seek to implement new approaches and methodologies aimed at reducing medical errors, infection control lapses and other causes of patient harm that occur in interactions with healthcare providers. In an interview with Fierce Healthcare’s Paige Minemyer, Dr. Tejal K. Gandhi, IHI’s chief clinical and safety officer and one of the committee’s co-chairs, said that “the steering committee is looking to set between 10 and 15 patient safety goals that haven’t had the attention they deserve. Providers have focused on reducing readmissions or improving infection rates, for example, but could put more focus on building a culture of safety.” The group, Minemyer reports, notes that medical errors are a common problem. “A study released late last year by IHI and NPSF found that one in five patients have experienced an error, and a 2016 study published in the British Medical Journal found that medical harm is the third leading cause of death in the U.S.”
ED Accreditation to Improve Treatment of Elderly Patients
The American College of Emergency Physicians has created a voluntary accreditation program to improve the treatment of elderly patients in emergency departments, reports Modern Healthcare’s Maria Castallucci. “Geriatric patients,” she notes, “make up a significant percentage of ED admissions, yet EDs aren’t equipped with the personnel or resources to appropriately treat them, according to the ACEP. EDs were designed to treat patients with single acute episodes like a heart attack or gunshot wound. But most geriatric patients present with multiple chronic conditions and social needs. The geriatric emergency department accreditation program will require EDs to have specific policies and procedures in place to care for the geriatric population better.
Data on Increase in Deaths from Falls
AARP, citing data from the CDC, reports a 31% jump over a decade in deaths from falls among Americans over 65. If deaths from falls continue to increase at the same rate, the U.S. can expect 59,000 older adults will die because of a fall in 2030. The chance of falling increases with age, and risk is higher with certain chronic diseases such as a history of stroke, arthritis, diabetes, dementia, and Parkinson’s disease. According to the CDC, deaths from unintentional injuries are the seventh leading cause of death among older adults and falls account for the largest percentage of those deaths. Approximately one in four U.S. residents age 65 or older reports falling each year.
Intervention to Improve Staff-Resident Interaction in Nursing Homes
Researchers in Massachusetts, Texas, and Alabama have published a study describing a successful intervention designed to improve interaction and engagement between nursing home residents and the staff who provide their care. Central to the intervention was a model termed LOCK that incorporates observation, feedback, and relationship building to facilitate increased positive resident-staff encounters. “We developed the concept of Realizing Opportunities for Building Relationship to highlight the possibility of staff using existing time to improve their relationships with residents through interactions in the course of daily routines. By interacting positively while working within the residence personal space, busy staff can increase resident engagement by using opportunities that are already present. Multitasking played an important role in this engagement success, with one third of the total engagement time occurring while aides performed other activities, such as preparing a meal or folding laundry.”
New Report on Millennial Family Caregivers
AARP Public Policy Institute analyst Brendan Flinn has written an extensive report on the emerging generation of family caregivers–Millennials. Flynn paints a comprehensive caregiving picture of this cohort, documenting their diversity, gender, education, time spent delivering care, employment status and out-of-pocket expenses. “The Millennial generation is changing how to answer the question, who is a family caregiver? It is likely, for example, that the overall racial/ethnic composition of family caregivers will become more diverse as Millennials become an even larger share of the caregiving population. As a result, the demand for tools and resources to meet the needs of multicultural families will rise. Similarly, if the trend of fewer Millennials marrying continues to hold, the family structure of the typical family caregiver could shift and perhaps shrink—and make it more likely in the future that those in need of family care will have fewer people to call on. Millennials will become a more dominant share of the labor force. The greater number of Millennial family caregivers employed will bring a greater need for flexible and supportive workplace policies. The issue of low incomes among Millennial family caregivers will also need to be addressed. Combined with other debt, the cost of family caregiving may become unsustainable for Millennials to bear if incomes do not increase over time.”
Two Recent Analyses of Medicaid Section 1115 Waivers
In connection with the Medicaid items discussed above, two recent publications have analyzed the potential impact of Section 1115 waivers. From the Center on Budget and Policy Priorities comes a detailed dissection of the various state proposals, some of which have been approved while others are pending. “Rather than further the objectives of Medicaid as federal law requires, these proposals undermine Medicaid’s goals by making it harder for people to stay covered and thereby reducing access to care. These proposals will have additional—and likely unintended—adverse effects due to their complexity, which poses major implementation challenges for states and major challenges for eligible individuals seeking to maintain the coverage.”

For its part, the Health Research Institute focuses specifically on work requirement waiver requests and, like CBPP, forecasts significant and deleterious disruptions in Medicaid beneficiaries’ access to care. “The new requirements could dramatically increase churn by increasing the likelihood of consumers moving in and out of Medicaid programs as eligibility changes. Moreover, providers should prepare for disruptions caused by consumers’ uncertainties over coverage. Creating new verification systems may result in several disconnects as consumers seek care. Interrupted treatment due to beneficiaries losing coverage, legitimately or erroneously, can affect consumers’ ability to seek care, raising the risk to providers that uncompensated care costs will increase.”
A Guide to Medicare Home Health Coverage
The Center for Medicare Advocacy has published a comprehensive guide to Medicare home health coverage, emphasizing that, rather than offering a short term benefit, the coverage in fact provides long-term care. Under the law, people who meet the threshold qualifying criteria (legally homebound and needing skilled care) are eligible for Medicare home health coverage so long as they need skilled care. In fact, CMA points out, Congress actually acted affirmatively to authorize long-term Medicare home health coverage in 1980–removing the annual cap on visits and rescinding the prior hospital stay requirement.”
NASEM Initiates Study on Care Interventions for Individuals With Dementia and Their Caregivers
The National Academies (NASEM) are initiating a two-phase National Institute on Aging-sponsored study on care interventions for individuals with dementia and their caregivers. A NASEM study committee will first assist the Agency for Healthcare Research and Quality in developing a systematic review of evidence on effective care related to these individuals. In an anticipated second phase, the committee will reconvene to consider the evidence found in the review and develop a report that informs decision-making about care interventions that are supported by sufficient evidence to be widely disseminated and implemented,. For further information contact, Daniel Flynn dflynn@nas.edu .
Telemedicine as Mainstream Medicine
As discussed above, telemedicine is making its way into mainstream medicine. But as the Washington Post’s Dhruv Khullar observes, “[Yes] telemedicine is perhaps the most rapidly evolving area in healthcare. About 15 million Americans receive some form of remote medical care every year. Kaiser Permanente, the nation’s largest integrated delivery system, provides more visits virtually than it does in person. All of which raises an important question: Do doctors know how to use telemedicine? Misdiagnosis, for example, remains a fundamental problem in medicine, and it is not clear whether telemedicine will ameliorate or exacerbate it. Much of medical diagnosis remains clinical gestalt: an integrated assessment based on labs, history, and exam. But how should this evaluation vary by the medium in which a patient is cared for? Should doctors feel comfortable making some diagnoses remotely, but not others? Should they adjust their threshold for ordering more tests, or dismissing minor complaints, when caring for patients on a screen instead of in an office? Building rapport with patients remotely is also more difficult than in person. The subtle cues that bond doctor and patient are largely absent during a virtual visit, and some argue we should teach not just bedside manner but also ‘website manner.’ Dr. Randall Sharma, emergency physician in chief at New York Presbyterian-Weil Cornell Medical Center, thinks we need not just more training but a new medical specialty entirely: the ‘medical virtualist.’ Such individuals would be doctors who spend most or all of the time caring for patients remotely and receive dedicated training and certification. Sharma helped launch one of the country’s first telemedicine programs based in an emergency department, offering patients with minor complaints the option to be seen virtually. ‘Patients love it,’ Sharma said, ‘and not just Millennial’s. 20% of our telemedicine visits are for persons patients over 65. We’ve even treated people over 100. If you can get them to buy in, you can get anyone to buy in.’”
Technology-Enabled Episodes of Care (TEEs): A New Reimbursement Category
 Coming at the increasing introduction of technology into the doctor-patient interaction from a different perspective, Health Affairs blogger Mark Lutes makes the case for a new reimbursement category: technology-enabled episodes of care (TEE’s). “For too long,” Lutes writes , “current procedural terminology and healthcare common procedure coding system codes have not evolved to adequately track and pay for person-focused, technology-enabled care management. It’s time for policymakers to catch up with technology, exploring payment and coverage methodologies that nurture these innovations. Quality, cost, and competition will benefit if a range of entities with technology, learning, and patient engagement capabilities deliver these TEEs. Many companies are already managing chronic diseases, postacute care, and other episodes, as subcontractors to employers, insurers, Medicare Advantage, and other plans. The same benefits from focused care management should be available to original Medicare and other fee-for-service contexts. CMS has already crossed the Rubicon on this issue. Effective April 1, 2018, the physician fee schedule implemented coding, coverage, and payment for a diabetes prevention program (DPP), providing billing and reimbursement directly to suppliers operating outside of the traditional doctor’s office or hospital. The program aims to prevent the progression to type II diabetes in individuals with prediabetes. The DPP is a model for the introduction of new entities into care management and delivery of episodes on a performance payment basis.”
How Do We Define Death? Two Articles Explore the Question
Reverberations from the revelatory reporting of the New Yorker’s Rachel Aviv are present in two recent articles regarding the increasingly contentious issue of how to define death. The New York Times’ Ross Douthat revisits the case of Jahi McMath, chronicled by Aviv, as well as that of Alfie Evans, a 2-year-old with a devastating brain condition whose parents were denied the chance to move him to another hospital or country by a decree from doctors and judges that the time had come for him to die. “The tendency to arrogate power away from the family is not just an issue for extreme medical cases,” Douthat writes. “As in Aviv’s previous story about guardianship among the elderly, it plays out in a more prosaic and yet similarly shocking form—with old people who are hardly incompetent handed over to professional guardians who sell their assets and consign them to assisted-living facilities from which they can’t escape. The basic dynamic is similar to the McMath and Evans cases but with generational roles reversed: Instead of parents trying to pry the children away from the medical establishment, you have adult children unable to bring the parents home because their state appointed guardians say no. Such a system is custom-built for the coming world of post-familialism. Just as more and more children are growing up without the active father who fought for Alfie Evans and the extended kinship network that saved Jahi McMath, more and more people will face old age without sons and daughters to care for them or to challenge the medical-judicial complex’s will. It is the task of our present to ensure that where the family still has the capacity to choose for an aging parent or a dying child, the family rather than the system gets to make the choice. Yes that choice may be wrong; it may have its own dark or foolish motivations. But those are risks a humane society has to take, so that in our weakest moments we can hope to be surrounded not just by knowledge or power, but by love.”

In a similar vein the Economist magazine addresses the brain versus heartbeat death criteria debate in an essay on “The meaning of mortality.” “It is hard for people to accept that someone is dead when faced with a relative who is warm and rosy cheeked. Most surveys ask about the mind and body only, thereby failing to allow for a third component, call it life force or a person’s essence, which many people, whatever the country, believe exists, and is not necessarily associated with the brain. Few dispute that, for society to function, death must be clearly defined. But there are growing calls for countries to allow people to opt out of the national definition—within limits—by making their wishes known. Allowing people some discretion would have practical implications. But none seems insurmountable. The limited examples in Japan, Israel, and parts of America have thrown up few problems. Societies find ways to deal with similarly tricky matters. Even when less is at stake.”
Bullying: Not Just for Kids
 “The unwanted were turned away from cafeteria tables. Fist fights broke out at karaoke. Dances became breeding grounds for gossip and cruelty. It became clear that this place had a bullying problem on its hands. What many found surprising,” writes Associated Press reporter Matt Sedensky, “was that the perpetrators and victims alike were senior citizens. ‘It’s the clique system just like everywhere else,’ noted Betsy Grant, who until recently was assistant director at San Francisco’s 30th Street senior center. ‘It’s like Mean Girls but everyone is 80.’ Robin Boniface, a social work professor at Arizona State University, said existing studies suggest about one in five seniors encounters bullying. She sees it as an outgrowth of frustrations characteristic in communal settings, as well as a reflection of issues unique to getting older. Many elderly see their independence and sense of control disappear and, for some, becoming a bully can feel like regaining some of that lost power. ‘It makes them feel very out of control and the way they sort of get on top of things and make their name in this new world is intimidating, picking on people, gossiping.’”
Aging Well at Home
 Avoiding bullying in communal settings is not the main reason that the New York Times’ Jane Brody writes about How to Age Well and Stay in Your Home. Of course, says Brody, “aging in place is not for everyone. Some seniors may prefer to leave the dwelling long shared with a now-gone partner, some may want the security of knowing that physical and medical assistance is but a bell ring away. Others may simply be fed up with having to care for a home. But for those of us who relish the familiarity of the status quo and perhaps cannot afford the $50,000 a year or more assisted-living costs, our current homes will require some adjustments to postpone—and perhaps obviate—any need to move to safer if not more pleasurable dwellings. Brody recommends a “helpful, comprehensive, and not overwhelming book, ‘Aging in place: a guide to modifying, organizing and decluttering mom and dad’s home’ by occupational therapist Lynda G Shrager. ‘It’s cheaper to stay in your home even if you have to make some renovations and getting an aide a few days a week to help,’ Shrager said in an interview. ‘It’s money well spent and a lot cheaper than assisted-living. But it’s important not to wait until there’s a crisis—a parent falls and breaks her hip.’” Brody, now in her 70s and remaining in her home, acknowledges the challenges of navigating through the pitfalls Schrager addresses. “Kitchens are a special challenge for seniors with physical issues. When mine was built 50 years ago, I was nearly 3 inches taller and my husband (now deceased) was a foot taller than I. We wisely had cabinets but with pullout drawers. I store most-used items on lower shelves, but now reaching the bottom shelf of some cabinets is a challenge for me.”
How Anthem Declines ER Payments
“Guessing wrong on when a condition is a life-threatening medical emergency could mean a huge bill—or worse,” New York Times reporters Reed Abelson, Margot Sanger-Katz, and Julie Creswell write as they examine claims payment decision-making by health insurer Anthem. “Anthem denied thousands of claims last year under its ‘avoidable ER program,’ according to a sample of emergency room bills analyzed by the American College of Emergency Physicians. The program, which Anthem has been rolling out in a handful of states in recent years, reviews claims based on the final diagnosis of patients. The company says the policy’s goal is to reduce the use of emergency rooms, one of the most expensive places to receive medical care. Anthem recommends that patients with sprains and upper respiratory infections consider a visit to a primary care doctor or urgent care center rather than the ER. Doctors and consumer advocates, however, argue that the policy forces patients to diagnose their own illness, and may discourage people with serious problems from seeking care.” Their criticism seems to have had an effect. For now, Anthem appears to be denying fewer claims–though it also expanded its policy to several more states. “In Missouri,” the reporters write, “the state legislature has recently passed a bill to shield patients from the dysfunction of the emergency department. The legislation will prevent insurance companies from rejecting bills solely on the basis of the final diagnosis.”
Prohibiting Wheelchairs in Assisted Living
The New York Times’ New Old Age columnist Paula Span tackles the prohibition of wheelchairs “in the last place you expect”—assisted living facilities. Span explores the current maze of state laws related to assisted living ambulation requirements, as well as a federal lawsuit filed in New York challenging wheelchair restrictions on the grounds they violate the Fair Housing Act, the Americans with Disabilities Act, and other federal statutes. “New York state regulations governing adult care facilities and Medicaid funded assisted living programs do currently prohibit residents who are chronically ‘chairfast’ and unable to transfer or require assistance to transfer—even when, as in the case that has been filed, the buildings have elevators. But, as Fred Freiberg, whose anti-discrimination group filed the federal suit, put it, ‘There is going to be a much larger number of people in the next few years who will need assisted living, and those facilities need to be open to people.’”
Researching the Value of the In-Person, Doctor-Patient Relationship
While the march towards telemedicine and non-physician technological interventions with patients proceeds apace, not all the developmental energy is going in that direction. In a lengthy New York Magazine piece , Kim Tingley takes readers on a journey with University of Chicago economist and primary care physician Dr. David Meltzer. “The question of what the role of a primary care physician should be, and how it should be valued, has perhaps never been more urgent. Surprisingly little is known, though, about what the relationship between the patient and his or her primary care doctor is actually worth, in terms of that patient’s overall well-being or medical costs, regardless of who bears them. In fact, Meltzer is the first and only researcher in the country trying to quantify that relationship’s value in a randomized clinical trial, the most rigorous scientific method. Preliminary results of the experiment suggest that strengthening the patient-doctor relationship can significantly reduce patients’ hospitalizations and expenses (to hospitals and Medicare) and improve their mental health. ‘One of the tragedies of American medicine is that the money doesn’t really align with value,’ Melzer told me. Much of what I saw during my travels with Metzger was as remarkable as it was tedious: the tedium itself seemed noteworthy. During clinic appointments, which typically lasted 30 minutes, and hospital rounds, the doctors appeared to be fascinated by trivial sounding details and tangents: a patient’s description of the shortcomings of the spaghetti at her physical therapy center; stops on another’s bus route; the reasons a third believed an eviction notice violated his civil rights. Only gradually did the medical relevance of these conversations reveal themselves. The first patient needed a high-calorie, easy to swallow meal supplement; the second, a recovering alcoholic, could avoid passing a liquor store by switching his route; the third was not discharged until his doctor called his building manager to make sure he could get into his apartment to plug in his oxygen. Meltzer insists that doctors spending more time with their patients actually saves money. After a year in his clinic, for instance, patients have 20% fewer hospitalizations than their control group counterparts. Because hospitalizations make up the greatest portion of these patients’ annual cost to Medicare, which averages $50,000–$75,000 each, that reduction is worth several thousand dollars per person in the first year, or a combined several million dollars; by comparison, the doctor’s annual salaries add up to less than $1 million.”

Tingley concludes his account of his experiences with Meltzer and his colleagues by observing that “I had watched them confront a breathtaking variety of indignities that age and sickness force upon human beings: impotence, incontinence, immobility, dementia. What both doctors and patients were after, it seemed, was not just an assignation of ‘value’ but of meaning. The better they knew one another, the harder their relationship was to define wholly in medical terms. Meltzer characterized this singular connection for me one afternoon. ‘Being able to even just touch in for a little bit, have the conversation and talk about it, there’s an intimacy to it,’ he said, shortly after telling one of his own primary care patients in the hospital that she had cancer. The subconscious swap of ‘touch in’ for ‘check in’ evoked the laying on of hands—an antiquated, unbillable and, in the face of cancer, useless gesture, but quite possibly, not a worthless one.”
We Have a New Address!
As of June 1, please make note of our new address:

101 Montgomery Street | Suite 2150 | San Francisco, CA 94104

Our phone numbers, email addresses, and website (including FCA CareJourney and Learning Center) have not changed.
Follow Family Caregiver Alliance / National Center on Caregiving @CaregiverAlly
and Executive Director Kathleen Kelly @KKellyFCA.
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Editor: Alan K. Kaplan, (attorney and health policy consultant)
Contributor: Kathleen Kelly (executive director)
Layout: Francesca Pera (communications specialist)

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