Vol. 18, No. 10
November 30, 2018

Election returns bolster Obamacare and Medicaid support | House Democrats push for pre-existing condition insurance protection | Section 1332 waiver ‘guidance’ stirs concern | New association health plans pass muster, so far | CMS updates home health benefit structure and Nursing Home Compare | SNF coverage continues during brief patient home visits | HHS addresses social determinants of health status | Medicaid HCBS spousal impoverishment protection faces end-of-year sunset | Maine votes ‘no’ on universal home health benefit | No letup on Medicaid work requirement debate | New England Journal of Medicine ‘social determinants’ | New palliative care guidelines published | A call to strengthen the caregiving workforce | The cost of preventable hospital acquired conditions | Informing families about nursing home safety records | A new chronic care management toolkit | The financial impact of hospitals’ consolidation | A $48,000 allergy test | Home health aides’ struggle to make ends meet | The sandwich generation’s caregiving burden | Caregiving for the abandoned | The ever elusive Alzheimer’s cure | Too much ‘medicalization’ | Comforting the bereaved | Atul Gawande ponders the impact of electronic health records
Election returns bolster Obamacare and Medicaid support
The late Sen. John McCain’s middle of the night thumbs down gesture in August 2017 sealing the demise of the Republicans’ effort to repeal Obamacare stood the test of time as Americans went to the polls on November 6. In a midterm election that turned heavily on healthcare issues, Obamacare and Medicaid expansion garnered widespread support “Healthcare was on the ballot, and healthcare won,” probable House Speaker-to-be Nancy Pelosi exclaimed. As Roll Call’s Misty Williams summarized , “voters in three deep red states — Nebraska, Idaho and Utah — bucked their Republican lawmakers by approving ballot initiatives to extend Medicaid coverage to more than 300,000 people. Meanwhile, Democratic gubernatorial wins in Kansas and Wisconsin boosted the chances of expansion in those states. And Maine’s new Gov.-elect is expected to act quickly to grow the government insurance program when she takes office in January. This election proves that politicians who fought to repeal the affordable care act got it wrong,’ said Jonathan Schleifer, head of the Fairness Project, an advocacy group that supported state ballot initiatives. ‘Americans want to live in a country where everyone can go to the doctor without going bankrupt.’”

Positive news on Medicaid expansion dovetailed with the release of a study from America’s Health Insurance Plans (AHIP) documenting that “Americans with asthma, diabetes or serious mood disorders who are enrolled in the Medicaid program have far superior clinical experiences than people without coverage. The results from this report are significant, demonstrating that Medicaid delivers better care, results in better health outcomes, and improves chronic conditions for millions of Americans every day.”

Looking at the bigger election picture — including Medicare and Obamacare — Kaiser Family Foundation’s Pres. Drew Altman asserted that “Democratic control of the House stops any Republican efforts to revive their efforts to repeal and replace the Affordable Care Act, block grant Medicaid or impose a per capita cap on federal Medicaid spending. The same applies to any big changes Republicans might want to make to Medicare. With Paul Ryan gone, Republicans will steer clear of premium support or other major Medicare changes. Only smaller Medicare budget savers will stand any chance.”

With that said, Trump administration officials, according to the New York Times’ Robert Pear, “said they did not expect any fundamental changes in health policy as a result of the elections. Much of the president’s policy has been shaped and carried out by Seema Verma, the administrator of CMS. Aides said that Ms. Verma intended to stay on the job, but that the administration’s health policies would remain intact even if she left. Her top deputy, Paul Mango, an unsuccessful candidate for governor of Pennsylvania, wrote last year that Obamacare ‘has been a disaster.’ (Moreover) the official recruited last month to run the national Medicaid program, Mary Mayhew, strenuously opposed the expansion of Medicaid when she was Commissioner of Health and Human Services in Maine.”
House Democrats push for pre-existing condition insurance protection
House Democrats who will be assuming committee chairmanships in January are signaling that a top priority will be the protection of pre-existing condition coverage currently under a sword of Damocles in the form of a pending Texas U.S. District Court ruling on the constitutionality of the ACA, including patient protection elements. “We need a vote on pre-existing conditions right away,” incoming House Ways and Means Committee chair representative Richard E. Neal said in a post election interview in his hometown of Springfield, Massachusetts. As reported by the Washington Post’s Erica Werner, “Neil said he envisioned legislation that would affirm guaranteed coverage for pre-existing conditions as settled law — and it would strike back at the lawsuit 20 Republican-led states are pursuing to declare the ACA unconstitutional. ‘We can’t go back-and-forth on these things every election cycle. Let’s establish the principle, embrace it and move on.’”
Section 1332 waiver ‘guidance’ stirs concern
The emerging Trump-House battle lines regarding healthcare can be seen in another recent administration initiative. Late October saw the issuance of guidance (and late November the publication of a discussion paper) describing the administration’s plan to support states in setting up systems for regulating and subsidizing insurance by granting waivers under section 1332 of the ACA. As Obamacare expert Prof. Timothy Jost observes , “section 1332 of the ACA authorizes HHS and the Treasury Department to waive certain ACA provisions — those governing qualified health plans sold on the marketplaces and marketplace operations, cost-sharing reductions, premium tax credits, and the individual and employer responsibility requirements — for states that propose alternative approaches to offering coverage in the individual and small group health insurance markets. Section 1332 requires, however, that state waiver proposals stay within specified ‘guardrails.’ (But) the Trump administration’s guidance reinterprets each of section 1332’s ‘guardrails’ to permit states to allow coverage that deviates from ACA requirements. The administration is attempting to accomplish through administrative fiat changes in the ACA that Republicans repeatedly tried and failed to bring about through legislation in 2017. 1332 guidance,” argues Jost, “promises to further exacerbate differences in coverage between red and blue states.”
New association health plans pass muster, so far
So far, so good. That’s the conclusion reached by an examination of the first association health plans authorized by last June’s easing of restrictions, according to Modern Healthcare’s Shelby Livingston. “Most of the early Association health plans being formed or expanded under the June rule claim to comply with ACA mandates and say they aren’t charging people different premiums based on their health conditions or barring people with pre-existing conditions from enrolling. Sponsors of the plans also say they cover each of the essential health benefits, provide broad networks of doctors, and don’t impose annual or lifetime limits on coverage. In the latest example, farmer-owned cooperative Land O’Lakes said its self-insured association plan, which it is expanding to farmers across state lines under the new rule, will cost about 25 to 35% less than exchange plans in Nebraska, and 10 to 12% less than comparable plans in Minnesota. Some healthcare advocates and ACA supporters had railed against the rule, saying it would expand the availability of junk health plans and undermine state exchanges. Democratic Attorneys General in 11 states and the District of Columbia sued in late July to block the rule, and that case is pending. (But) Modern Healthcare reviewed the plan documents for Land O’Lakes’ eight Nebraska plans, including a platinum level plan, gold plan, and three silver and three bronze options. They feature a range of deductibles and appear to provide coverage for each category of essential health benefits including prescription drugs, maternity care and mental health and substance abuse treatment.”
CMS updates home health benefit structure and Nursing Home Compare
A final rule issued by CMS October 31 will allow home health agencies to bill Medicare for remote patient monitoring. The benefit is part of a wide-ranging HHA update that includes a new case mix system and a new home infusion therapy benefit. “Beginning with CY 2020,” CMS states in its announcement, (the agency) “is implementing changes required by law including a new case mix system called the Patient-Driven Groupings Model (PDGM) that puts the focus on patient needs rather than the volume of care. The PDGM relies more heavily on patient characteristics to more accurately pay for home health services. CMS is (also) promoting innovation and modernization of home healthcare by allowing the cost of remote patient monitoring to be reported by home health agencies as allowable costs on the Medicare cost report form. This is expected to help foster the adoption of emerging technologies by home health agencies and result in more effective care planning, as data are shared among patients, their caregivers and their providers. The use of such technology will allow for greater patient independence and empowerment.”

CMS has also updated quality measures for skilled nursing facilities available on Nursing Home Compare. The update, according to Modern Healthcare’s Maria Castellucci, includes the following five measures: “percent of SNF patients that develop new or worsened pressure ulcers; percentage of patients whose activities of daily living and thinking skills were assessed and related goals were included in their treatment plan; percentage of patients who experience one or more falls with major injury during their SNF stay; Medicare spending per beneficiary for patients in SNFs; and rate of successful return to home or community from a SNF.”
SNF coverage continues during brief patient home visits
Just in time for the holiday season, the Center for Medicare Advocacy has published a guide to Medicare rules pertaining to ongoing coverage for SNF patients leaving a facility and making temporary visits to family or friends. “The Medicare Benefit Policy Manual,” the Center advises, “recognizes that although most beneficiaries are unable to leave their facility, ‘an outside pass or short leave of absence for the purpose of attending a special religious service, holiday meal, family occasion, going on a car ride, or for a trial visit home, is not by itself evidence that the individual no longer needs to be in a SNF for the receipt of required skill care.’ A facility should not notify patients that leaving the facility will lead to loss of Medicare coverage. The manual says that such a notice is ‘not appropriate.’”
HHS addresses social determinants of health status
In line with growing calls for health insurance to recognize social determinants of health status, HHS Sec. Alex Azar told a Washington audience that while “‘social determinants of health’ is an abstract term, for millions of Americans, it is a very tangible, frightening challenge: how can someone manage diabetes if they are constantly worrying about how they’re going to afford their meals each week? How can a mother with an asthmatic son really improve his health if it’s their living environment that’s driving his condition? This can feel like a frustrating, almost fruitless position for a healthcare provider, who understands what is driving the health conditions they’re trying to treat, who wants to help, but can’t simply write a prescription for healthy meals, a new home, or clean air. Thus far we have largely addressed social determinants by forging better connections between the health system and social services. But what if we went beyond connections and referrals? What if we provided solutions for the whole person, including addressing housing, nutrition and other social needs? What if we gave organizations more flexibility so they could pay beneficiaries’ rent if they were in unstable housing, or make sure that a diabetic had access to, and could afford, nutritious food? If that sounds like an exciting idea, I want you to stay tuned to what our Center for Medicare and Medicaid Innovation is up to. With respect to Medicaid, we have just announced new guidance for state Medicaid directors, inviting them to apply for waivers from Medicaid’s exclusion on paying for inpatient mental health treatment. These waivers will be modeled on the ones we have already given to 15 states to support treatment for substance use disorder, including opioid addiction. As with the existing waivers, the goal is not just to expand access to outpatient treatment, but also to support a broader range of treatment and recovery services.”
Medicaid HCBS spousal impoverishment protection faces end-of-year sunset
December 31 will mark the expiration of section 2404 of the ACA, which changed Medicaid spousal impoverishment rules to allow treatment of Medicaid home and community-based services (HCBS) and institutional care equally. The Kaiser Family Foundation has issued a comprehensive analysis of the “Potential Changes to Medicaid Long-term Care Spousal Impoverishment Rules: States Plans and Implications for Community Integration.” If Congress, the foundation observes, “does not extend section 2404, the spousal impoverishment rules will revert to a state option for HCBS waivers and will no longer apply to HCBS provided under other Medicaid authorities, unless states obtain a section 1115 waiver as of January 1, 2019. If reauthorized, the rules would provide stability and continuity for enrollees receiving HCBS and for states administering Medicaid eligibility determinations and renewals. In addition, applying more stringent Medicaid financial eligibility rules to HCBS than to nursing homes could affect states’ progress in expanding access to HCBS, rebalancing long-term services and supports spending, and promoting community integration.”
Maine votes ‘no’ on universal home health benefit
Amid the pro-Medicaid expansion news emanating from the 2018 election returns, one related initiative failed to muster enough votes to pass. As previously reported by Caregiving Policy Digest, Maine, whose electorate had repeatedly endorsed the Medicaid expansion effort, was also asked whether it favored establishment of a universally available home health benefit that, among other things, would help alleviate ever-growing family caregiver burdens. The answer, at least for now, and apparently based on opponents’ tax increase concerns, was “no” by a 63 to 37% majority.
No letup on Medicaid work requirement debate
Medicaid work requirements have continued to occupy the spotlight as Kentucky regained CMS’s consent to impose them, Wisconsin gained consent to impose them without expanding Medicaid, as well as to implement time limits on enrollment, and Arkansas continued disenrolling recipients for failure to comply with its work requirement rules. In Wisconsin’s case, the election returns may ultimately induce a different outcome inasmuch as Republican Gov. Scott Walker, a staunch opponent of Medicaid expansion and proponent of work requirements, lost his bid for reelection to a pro-expansion Democrat. Meanwhile, Arkansas’s purge of Medicaid enrollees extended to 15,000 since the state became the first to implement a work requirement earlier this year. “Expert and provider groups,” reports Modern Healthcare’s Harris Meyer, “have expressed alarm about the coverage losses and the viability of the state’s complex work and reporting requirements. Beneficiaries can only report through an online portal. The Arkansas Hospital Association has said it would like to see the requirement halted. Providers fear the new system will disrupt care for people with chronic conditions and drive up uncompensated-care costs. The Medicaid and Chip Payment and Access Commission’s chair Penny Thompson recently urged HHS Sec. Azar to pause disenrollments pending closer examination of the structure of Arkansas’s program. She also noted that the state has no CMS approved evaluation design in place to study the effectiveness of the five-year work requirement waiver program. And, in a November 1, 2018 letter to Arkansas’s Medicaid director, the CMS itself was critical of the state’s evaluation approach and requested a revised design.” Reporting from Little Rock, the Washington Post’s Catherine Rampell noted that “the question now is whether the many problems Arkansas is experiencing are because of specific and unwise implementation choices that the state made, and are therefore fixable, or whether the very premise of adding work requirements to a health insurance program is inherently, irredeemably flawed. There is clearly a political appetite for imposing conditions on lots of public benefits, to make sure no one is ‘taking advantage.’ Some health policy experts argue that work requirements could make conservatives feel more comfortable with Obamacare’s Medicaid expansion specifically, because work requirements would allow red states to expand insurance on their own terms. And, to be fair, Arkansas’s policy does seem especially poorly designed.” Adding to the already extensive literature on the work requirement issue, Justice in Aging has published an updated issue brief that looks specifically at “how Medicaid work requirements make it harder for family caregivers to meet their healthcare needs” and includes a state-by-state survey of work requirements and caregiving exemptions.
New England Journal of Medicine ‘social determinants’
The growing recognition of the importance of social determinants of health status has gained a significant new forum with the inauguration of a New England Journal of Medicine section devoted to case studies in social medicine and structural forces in clinical practice. “Many clinicians and trainees,” the new section’s overseers state, “see the social world as a messy, impenetrable black box: they may acknowledge its influence on their patients’ health, but they lack the understanding and tools for incorporating it usefully into their diagnostic reasoning and therapeutic interventions. But the social sciences of health and medicine provide such tools — theories and methods for understanding social processes and intervening to affect change.” A common theme linking cases in the new section “is the role of social structures in determining who gets sick and who gets better and why. Structure is a conceptual antidote to the tendency in clinical medicine to address all problems as a result of individual choices and residing in individual bodies. How, for example, do health systems participate in the creation of racial disparities in health, and what can be done to prevent and counteract that dynamic? How can a clinician work against harmful policies and administrative restrictions imposed by discriminatory disability determinations, regulation of particular medications, or unequal access to healthcare and social services? How does the medical world deem certain problems medical or nonmedical, and what effect does this categorization have on patient outcomes? These questions point to core concepts and social medicine that can be given concrete form in responses to clinical cases.”
New palliative care guidelines publishe d
A 400-plus page set of new guidelines for palliative care for all provider settings — including primary care offices, hospitals, specialty practices, behavioral health, and long-term nursing care facilities — has been published by the National Coalition for Hospice and Palliative Care. The guidelines, reports FierceHealthcare’s Paige Minemeyer, “focus on eight domains that cover a range of facets of palliative care, including ethical and legal concerns, cultural differences, psychological needs, and end-of-life care. The end-of-life domain, for example, was updated to reflect the need to have conversations about palliative care sooner following a serious illness diagnosis, and also now highlights the need to provide support to family members and caregivers. In addition, palliative care’s value in pediatrics is a focus throughout the report, with pediatric providers leading the charge to expand such care, and evidence of its value to patients beyond those at the end-of-life evident in neonatal intensive care units.”
A call to strengthen the caregiving workforce
Recommendations for strengthening the workforce for people with serious illness —emanating from a spring 2018 three-day conference at UC San Francisco — have been published in Health Affairs. The recommendations, write JoAnne Spetz and Nancy Dudley, cover seven areas “expanding the pipeline, incorporating family caregivers into healthcare teams, supporting the home care workforce, leveraging technology to advance patient-centered team care, advocating for payment models that support community-based team-focused serious illness care, instilling cultural competency and humility skills across all health professions, and tracking the workforce.” With respect to family caregivers, the bloggers report that “discussions about the healthcare workforce rarely consider their importance. The expansion of best practices should start with caregivers at highest risk for burnout in patients with serious illness and complex care coordination needs. These efforts should be combined with research and evaluation because experts in attendance at the summit noted that there is a lack of evidence regarding which programs, supports, and team development programs are most impactful for patients and their families.”
The cost of preventable hospital acquired conditions
“A set of 14 hospital acquired conditions that the CMS considers avoidable” reports Modern Healthcare’s Harris Meyer, “accounted for 48,771 adverse patient outcomes, 3,219 deaths and more than $2 billion in excess hospital costs in 2016, according to a new research brief from IBM Watson Health. Patients experiencing these hospital acquired conditions (HACs) were in the hospital about eight days longer on average than other patients, with an average excess hospital cost of $41,917, not including physician fees, according to the Watson analysis. Their increased mortality risk was 72.3%. The 14 HACs covered in the analysis include air embolism, blood incompatibility, states three and four pressure ulcers, falls and trauma, catheter associated urinary tract infection, and deep vein thrombosis/pulmonary embolism with total knee or hip replacement. These include so-called never events for which CMS does not pay for additional care associated with the complication.” Placing the Watson analysis, however, alongside a recent AHRQ report that looked at a wider set of HACs led to a more sanguine outlook. That report found that the rate of hospital acquired conditions overall declined by 8% from 2014 to 2016, saving about $2.9 billion and preventing about 8,000 deaths. AHRQ patient safety specialist Noel Ethridge attributed the decline to providers increasingly using evidence-based practices and root-cause analysis to improve clinical care processes.”
Informing families about nursing home safety records
As noted above, CMS’s star rating methodology for nursing homes has recently undergone some revision, but a new study published in Health Affairs suggests there is more to do to provide useful comparative information, specifically, about patient safety events. Nursing homes, Modern Healthcare’s Maria Castellucci reports , “have received star ratings from the CMS since 2008. In the latest release of the ratings in October, the majority of the nursing homes — 4,369 — earned five stars, while just 1,853 nursing homes got a one star rating. All in all, 15,396 nursing homes received a star rating from CMS in October. In order, however, for the star ratings to better reflect patient safety events, the journal article’s authors suggest that CMS place nursing homes’ performance on the patient safety measures in a separate subset of Nursing Home Compare. ‘Raising the visibility of patient safety measure should serve not only to inform consumers but also to provide a stronger incentive for nursing homes to improve on those measures’” Weighing in on the subject, “UCSF emeritus Prof. Charlene Harrington observed that ‘patient safety measures are self-reported and there is evidence that nursing homes don’t report them accurately. I’ve reviewed many nursing home legal cases, and it’s so frequent that they don’t report pressure sores, urinary tract infections and falls, so that is an underlying problem.’ Considering this, Harrington said the best objective source of information consumers have right now to assess nursing homes’ quality is their staffing ratios. ‘Right now, for consumers, staffing is such an important measure.’ The study’s authors themselves pose a dilemma in the quest for accurate safety measurements, namely, poor performance on measures doesn’t necessarily mean care is subpar. A higher fall rate, for example, could mean the nursing homes are allowing patients to have greater autonomy. ‘In the nursing home setting, there may be trade-offs between safety and quality of life. If you really want to prevent falls and other patient safety incidents, you can just restrain people, but that is going to be a horrible quality of life.’”
A new chronic care management toolkit
HHS has published a “toolkit” designed to inform providers and patients about how to access expanding resources available for managing chronic care situations. CCM codes, the toolkit notes, “will allow billing for services furnished to patients with two or more chronic conditions who are at significant risk of death, acute exacerbation or decompensation, or functional decline. The kit contains detailed guides to chronic care reimbursement, as well as ways to foster extension of the valuable services to patients .
Upcoming ACL webinar on new HCBS criteria
The third webinar in a series conducted by the Administration for Community Living, scheduled for December 13, will focus on state efforts to implement new federal set-up criteria for home and community-based services. Further information and registration are available on the ACL website .
2018 PCORI annual meeting recorded
Video recordings of sessions at the 2018 PCORI annual meeting have been posted on the agency’s website . The videos include meeting keynotes, as well as plenary and breakout sessions.
The financial impact of hospitals’ consolidation
No matter where one looks, the order of the day in healthcare appears to be merger and consolidation: hospitals coming together, hospitals absorbing physician practices, pharmacies merging with insurers and so on. When New York Times reporter Reed Abelson looked at the phenomenon and Times data tracking it, he concluded that while “hospitals have argued that consolidation benefits consumers with cheaper prices from coordinated services and other savings, our analysis shows the opposite is true. In many cases the mergers have essentially banished competition and raised prices for hospital admissions, according to an examination of 25 metropolitan areas with the highest rate of consolidation from 2010 through 2013, a peak period for mergers. The analysis showed that the price of an average hospital stay soared, with prices in most areas going up between 11% and 54% in the years afterward, according to researchers from the Nicholas C. Petris Center at the University of California, Berkeley. During the Obama years, the mergers received nearly universal approval from antitrust agencies, with the Federal Trade Commission moving to block only a small fraction of deals. Pres. Trump issued an executive order last year calling for more competition, saying his administration would focus on ‘limiting excessive consolidation throughout the healthcare system.’ In September Congress asked the Medicare advisory board to study the trend. Abelson points to New Haven, Connecticut, as a striking example of the trend. Yale New Haven Health, one of the largest hospital groups in Connecticut, took over the only competing hospital in the city and has also aggressively expanded along the state’s coast. The group recently added another hospital to its collection, merging Milford with its Bridgeport location. Although the price for hospital admission in the New Haven-Milford area was already three times higher than in other parts of the state, prices rose by 25% from 2012 to 2014, compared with 7% elsewhere in the state.”
A $48,000 allergy test
You would not have to convince Eureka, California, resident Janet Winston of the reality of Abelson’s findings. “A lot of scratch: the $48,329 allergy test” is how Kaiser Health News’ Barbara Feder Ostrov characterized the bill Winston received for attempting to deal with a persistent rash. Seeking specialized treatment, “Winston turned to Stanford Healthcare where she hoped to finally clear up her rash and discover everything she might be allergic to. Winston said that 119 tiny plastic containers of allergens were taped to her back over three days of testing. Her Stanford affiliated doctor had warned her that the extensive allergy skin patch testing she needed might be expensive. But she wasn’t too worried. After all, Stanford was an in-network provider for her insurer — and her insurance, one of her benefits as an employee of the state of California, always had been reliable. Then the bill came. Total: $48,329, including $848 for the time Winston spent with her doctor. Winston’s health insurer, Anthem Blue Cross, paid Stanford a negotiated rate of $11,376.47 and Stanford then billed Winston $3,103.73 as her 20% share of the negotiated rate. A medical billing analyst told Kaiser Health News that Stanford’s charges for Winston’s allergy patch test appeared excessive. ‘Stanford’s list price is a whopping $399 per allergen. That charge is astronomical and nuts,’ said Margaret Slurka, a retired informatics professor at Indiana University. For the type of allergy skin patch testing Winston received, the average charge physicians submitted to Medicare was about $16 per allergen in 2016, according to Medicare payment data. But Stanford Healthcare has a lot of power in dealing with insurers like Anthem. The academic medical system includes hospitals and outpatient clinics across the San Francisco Bay Area as well as a number of large doctor practices in the region. That kind of consolidation and market power can raise healthcare prices. Insurers in the region have long grappled with Stanford’s high costs, at times withdrawing the health system from their networks. But the breadth and depth of the academic medical system — not to mention its popularity with high-end customers in the Bay Area — makes it difficult for insurers to exclude a powerhouse like Stanford from a network for long. After some bargaining with Stanford’s billing department, Winston ultimately paid $1,561.86 out of pocket. Still, Stanford received more than $12,000 in total from Winston and her insurer for the allergy patch test — a cost that is borne by insurance policy holders and taxpayers.”
Home health aides’ struggle to make ends meet
“After working more than three decades as a home health aide, Youlanda Allen brings home $32,500 a year including overtime, which is why she also cleans houses on weekends.” So begins Wall Street Journal reporter Clare Ansberry’s account of the impact of the soaring demand for hands-on paid caregivers and the fact that their wages are often too low to live on. “‘I need my hustle jobs on the side,’ says Ms. Allen, 51 years old, who began her career while in high school and continued while raising two children. She’s cared for hundreds of people, some with dementia and broken hips, others with heart disease. Most have been older, although she once cared for a 19-year-old man with AIDS. She helps them get out of bed, dressed, bathed and fed. She combs their hair and changes their sheets. Home healthcare agencies can’t find enough of such workers. Even with high demand and tight supply, wages remain stubbornly low. Between 2000 and 2017, inflation-adjusted median hourly wages for direct care workers — including home health aides, personal care aides and nursing assistants — fell 2% to $11.83 from $12.08, according to PHI, an organization that works with the direct care industry. A 40-hour week at that rate yields an annual income of around $24,000. Ms. Allen typically starts her workday at 7 a.m., seeing 8 to 10 people a day. She spends most mornings in assisted and skilled nursing facilities and in the afternoons drives to people’s homes, some an hour away. She volunteers for overtime and holiday shifts and takes home about $650 a week. She’s quick changing sheets and emptying trash, but is patient with her clients. ‘I take the time to get to know them. When one woman, a pianist seems blue, I take her down to a community room to play the piano.’”
The sandwich generation’s caregiving burden
While highlighting the challenges paid caregivers face in making ends meet, the Wall Street Journal has also cast an eye on the financial strain affecting family caregivers who find themselves supporting both a parent and an adult child. “When Barb Stricker married,” Journal reporters Michael M. Phillips and Heather Gillers write , “she and her husband wrote down a one-year plan for their lives together. Then a three-year plan. Five-and 10-year plans too. But the best laid plans of Barb and Brian have gone awry. One basement bedroom of the the bed-and-breakfast they had hoped to operate in their home is now occupied by Barb’s 83-year-old mother, and the other by her 34-year-old daughter. Barb has reached 64, and, thanks to her new responsibilities, can no longer afford to quit. There is a growing number of baby boomers who find themselves caring for both their elderly parents and their adult children, rather than kicking back at retirement age. They face the strain of constant caregiving and derailed dreams, as well as added expenses. It’s one more reason why many Americans are entering their retirement years as unprepared financially as any generation in years. Barb Stricker’s retirement plan fell victim to several bed turns. Her mother, rendered a shut-in by arthritis, didn’t have enough money for assisted living facilities. Her daughter had to move back after our own health setbacks. ‘I can make all of the plans in the world right now,’ Barb says, ‘and it doesn’t mean anything.’”
Caregiving for the abandoned
Caregiving, whether paid or family rendered, provides shelter and sustenance to an individual in need of caregiving support. What happens to those without either resource at hand? A Denver TV station set out to answer that question and, as reported by the AP, came upon Jerry Ellingsen, an 80-year-old man with Alzheimer’s disease found wandering alone at Denver’s airport after traveling with his small dog from Fort Myers, Florida. A three-month long investigation uncovered “a growing healthcare epidemic where hundreds of people like Jerry are abandoned every year at metro area hospitals. The epidemic is costing hospitals and in some cases, taxpayers, millions of dollars a year. Police in Jerry’s case pieced together a family dynamic that resulted in Jerry’s abandonment and eventual six-month long stay in a local hospital. At Denver Health there is a special wing called the Oasis unit that houses around 30 at risk adults on any given day. Denver Health reports it expected to spend $18 million on the Oasis unit in 2018. ‘It is heartbreaking, and I think the ones that are the most heartbreaking are the ones who don’t know who they are or where they came from,’ said Natalee Mejia, a nurse in the Oasis unit. The longest stay she recalls in the unit was two years. Anecdotally, Denver Health officials cited a case that resulted in a stay of eight years.”
The ever elusive Alzheimer’s cure
“Will we ever cure Alzheimer’s?” asked the New York Times Pam Belluck. Belluck reviews the many attempts that thus far have failed to produce a treatment to prevent, slow or reverse the devastating impacts of the disease. “For nearly two decades,” she writes, “researchers, funding agencies and clinical trials have largely focused on one strategy: trying to clear the brain of the clumps of beta-amyloid protein that form the plaques integrally linked to the disease. But, while some drugs have reduced the accumulation of amyloid, none has yet succeeded in stopping or reversing dementia. And amyloid doesn’t explain everything about Alzheimer’s; not everyone with amyloid plaques has the disease. There was a glimpse of promise this past summer when researchers reported the results of the first large clinical trial of a drug that, in the highest of five doses tested, not only slashed amyloid levels but also seemed to slow the progression of memory and thinking problems in people in the early phases of cognitive decline. However, while several experts said they were cautiously optimistic, much more testing of the drug, known as BAN 2401, is needed. Dr. Samuel Gandy, associate director of the Mount Sinai Alzheimer’s disease research center, noted that so far no drugs have managed even to modestly improve Alzheimer’s patients’ ability to function, which would allow them to remain independent longer. The reason Alzheimer’s research is littered with failed clinical trials lies beyond questions of specific catalysts. For one thing, researchers have found it difficult to engineer animals with symptoms mimicking human dementia so they can effectively try drugs on them before human testing. Then too, there is the fact that increasingly sophisticated scanning technology has revealed that damage to the brain in people with Alzheimer’s can begin decades before dementia symptoms appear. It’s possible that trials testing drugs on people with full-fledged dementia have failed because it’s too late, not necessarily because the theory is flawed.”
Too much ‘medicalization’
Discovery of an effective treatment for dementia and Alzheimer’s patients will constitute an unequivocal scientific-medical success. For Dr. Dhruv Khullar, however, writing in the New York Times, sometimes too much of a good thing — accurate diagnosis and treatment — can be a danger in disguise. Since the 1980s, Khullar writes, “there’s been rapid expansion in the number and complexity of medical diagnoses — a trend known as ‘medicalization.’ A recent study found that the cost of 12 newly medicalized conditions — things like irritable bowel syndrome, post-traumatic stress disorder, low testosterone, attention deficit hyperactivity disorder — now approaches $80 billion a year, or about 4% of total healthcare spending. Our ever-expanding armamentarium of diagnoses no doubt offers comfort, attention and treatment for many previously undiagnosed — and undiagnosable patients. But we may also be medicalizing much normal human behavior — labeling the healthy as diseased, and exposing them to undue risks of stigma, testing and treatment. Trouble sleeping is now insomnia. Shyness is social phobia. Grief is depression. Infidelity is sex addiction. It’s not that these diseases don’t exist — the spectrum of human behavior is broad, and the extremes do represent real pathology — but we may be drawing lines in the wrong places, with negative health and financial consequences. Five times as many children are now prescribed psychostimulants and antipsychotic medications as were in the 1980s. Today, 1/4 of children and teenagers take prescription drugs regularly, and 7% of older adolescents and young adults report abusing opioids — most of whom were initially prescribed them by a doctor. With millions of Americans taking risky medications for questionable diagnoses, have we medicalized everyday life?”
Comforting the bereaved
“Of all the things people say to me about my husband, who died suddenly and shockingly during our annual vacation in the 47th year of our marriage, it truly irks me when people sometimes sermonize, ‘he’s in a better place.’ I want to scream, no he’s not! He should be sleeping beside me; that is a better place. I can think of a lot better places — like Cabo in the winter, Maine in the summer, or Italy any time. The best place would be alive and healthy and of course with me. That would truly be a better place.” So begins Laurie Burrows Grad’s foray into the tangled web of “talking to the bereaved 101.” Grad spares no cliché in her effort to identify what should and should not be said by a comforter to a mourner. “When there is a death, many people say that the person has ‘passed.’ This is another banality that is hard for me to stomach. I assume this came from the belief of passing from one life into a spiritual afterlife. It is clear to me that Peter passed the gravy; he passed a football when he was young; he passed a gallstone; and he passed notes in class; but he didn’t pass away. He died. I recognize that people want to comfort me. They may say things that are thoughtless, but they are trying to help. I have learned a tolerance of others and am trying, through my blogging, to educate friends, family and the public on the best way to support me on my journey through grief.” Among Grad’s list of thoughtful remarks for those who want to know the kindest thing to say in times of grief: The best thing one can say is “I love you. (Actually, a hug is the very best thing, since someone whose spouse has died does not get hugs on a regular basis); I wish I had the right words to comfort you; Just know that I care; I don’t know how you feel, but I am available to help in any way I can; My favorite memory of your loved one is ... ; Or — say nothing. (Just be present with the person.).”
Atul Gawande ponders the impact of electronic health records
In his latest New Yorker article , Dr. Atul Gawande turns his attention to a vexing element of the emerging healthcare delivery system: electronic records. “Why doctors hate their computers” is the title of Gawande’s account of how the Epic health data system — now encompassing more than half of America’s health information — is impacting the daily life of practicing physicians. As he is done with so many other subjects, Gawande takes readers on a pulsating journey through the history of health data computerization, physician struggles with burnout, the emergence of a medical scribe position to reduce computers’ barrier to face-to-face doctor-patient interaction, and the pluses as well as minuses of the electronic revolution. For Greg Meyer, chief clinical officer at Gawande’s home base, Partners Healthcare, the pluses of computerized record keeping are compelling. “‘We think of this as a system for us and it’s not,’ Meyer said. ‘It is for the patients.’ While some 60,000 staff members use the system, almost 10 times as many patients log into it to look up their lab reports, remind themselves of the medications they are supposed to take, read the office notes that their doctor wrote in order to better understand what they have been told. Today, patients are the fastest growing user group for electronic medical records. Computerization also allows clinicians to help patients in ways that hadn’t been possible before. In one project, Partners is scanning records to identify people who have been on opioids for more than three months, in order to provide outreach and reduce the risk of overdose. The ability to import records from all hospitals that use the same software is driving real improvements in care.” Gawande states,“While my hospital had, over the years, computerized many records and processes, the new Epic system would give us one platform for doing almost everything health professionals needed — recording and communicating our medical observations, sending prescriptions to a patient’s pharmacy, ordering tests and scans, viewing results, scheduling surgery, sending insurance bills. With Epic, paper lab-order slips, vital-signs charts, and hospital-work records would disappear. We’d be greener, faster, better. Doctors are among the most technology avid people in society; computerization has simplified tasks in many industries. Yet somehow we’ve reached a point where people in the medical profession actively, viscerally, volubly hate their computers. Three years on I’ve come to feel that a system that promised to increase my mastery over my work has, instead, increased my work’s mastery over me. I’m not the only one. In the examination room, physicians find themselves devoting half of their patient time facing a screen to do electronic tasks, and those tasks are often spilling over after hours. Medicine is a complex adaptive system. It is made up of many interconnected, multilayered parts, and it is meant to evolve with time and changing conditions. Software is not. It is complex, but it does not adapt. That is the heart of the problem for its users, us humans. We ultimately need systems that make the right care simpler for both patients and professionals, not more complicated. And those systems must do so in ways that strengthen our human connections, instead of weakening them.”
FCA Recognizes National Family Caregivers Month
Family Caregiver Alliance has recognized National Family Caregivers Month during this November with a wealth of new and updated educational materials, webinars, and videos. Special features have been highlighted each week on our Twitter and Facebook pages. Many are in multiple languages and all materials are available online at no charge at www.caregiver.org .
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Professional Studies
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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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