Vol. 19, No. 5
June 5, 2019

In This Issue: A ‘surprise’ medical bill fix? :: A real surprise: observation stays :: ‘Step therapy’ gets CMS nod :: FDA lifts lid on medical device harms :: Preventable hospital deaths: some good news, some bad :: Does anything alleviate nursing home residents’ anxiety? :: An expanded timeframe for post-hospital transitions :: Readmissions and social determinants of health :: HRRP in the crosshairs :: More uses for lawyers in complex care cases :: AI and disability :: Family caregivers as medical product development contributors :: The 2018 Profile of Older Americans :: A guide to rehab services’ ‘star’ ratings :: Alexa v. human contact in health care delivery :: Health system ‘opportunity cost’ :: A doctor’s brush with a ‘broken’ health care system :: The unmet promise of parity in mental health treatment :: A morning office appointment is better for you :: Alarms raised over generic drugs :: The travails of board and care aides :: ‘Compassionomics’ :: A plea to end ageism in medicine
‘Surprise’ Medical Bills Issue Gets Rare Bipartisan Response
Amid the gridlock in Washington between Democrats and Republicans on Capitol Hill, and between the democratically controlled House of Representatives and Pres. Trump’s White House, some bipartisan seedlings are stirring. One catalyst: the growing political pressure to do something about “surprise” medical bills. The issue seems likely to engender a legislative result given the emerging alignment of supporters on both sides of the Senate and House chambers and the President’s strong endorsement of a “fix.” His intervention, Modern Healthcare’s Susannah Luthi reported , came in early May: “‘We’re going to hold insurance companies and hospitals totally accountable,’ Trump said at an event where he was flanked by congressional lawmakers, HHS Secretary Alex Azar, Labor Secretary Alex Acosta and patients who have been hit by surprise medical bills. For their part, insurers and hospitals have been fighting for the lightest possible touch when it comes to the issue, clashing with policy analysts over the scope of the policy fix.” The Washington Post’s Amy Goldstein observed that “Trump did not delve into many specifics but outlined contours of potential legislation where there tends to be agreement. He said patients who are taken to emergency rooms should not be charged extra if the hospitals or the ER doctors are outside the patients’ insurance networks. Patients similarly should not be sent unexpectedly large bills if the hospitals and main physicians they choose for elective surgery are covered by their insurers, but an extra doctor—such as an anesthesiologist or radiologist—is not. Trump’s tone was uncommonly collaborative and bipartisan. ‘My administration is eager to work with both parties’ to tame medical bills. From what I understand, we have bipartisan support, which is kind of shocking.’”

STOP Surprise Medical Bills Act
The final contours of any legislative package will emerge from the plethora of proposals and draft bills that began emerging in May from House and Senate health committee members. Analyzing one such bill—the STOP Surprise Medical Bills Act—Health Affairs bloggers Loren Adler, Paul B. Ginsberg, Mark Hall, and Erin Trish write that “The bipartisan Senate legislation protects patients from surprise out-of-network bills through a ‘billing regulation’ approach, which combines three elements: requiring the health plan to treat the out-of-network service as if it were in-network for purposes of enrollee cost-sharing, deductibles, and out-of-pocket limits; prohibiting out-of-network providers from ‘balance billing’ patients—that is, from billing the patient any amount above the patient’s in-network cost-sharing; and determining how much the health plan must pay to the out-of-network provider. The key differences among the several bills are how they define the surprise bills warranting protection and how the payment from insurer to out-of-network provider is determined.”

Witnesses Respond at House Subcommittee Hearing
Debate on a surprise bills fix is not confined to the White House or the halls of Congress. The AMA’s Dr. Bobby Mukkamala, reported MedPageToday’s Joyce Frieden, stressed that “Any solution must incorporate a mechanism to secure fair payment to providers. We urge Congress to avoid a solution that sets minimum payments for out-of-network providers at inadequate rates.” And from Jeanette Thornton, senior vice president for product, employer, and commercial policy at America’s Health Insurance Plans (AHIP): “We urge you to reject proposals that would use arbitration. That would result in excessive payments and increased premiums. It fails to address the root cause of surprise bills: exorbitant bills from specialty doctors.”
Observation Status: Hospitals Must Inform, but Medicare Patients Still Pay
It fell to the Center for Medicare Advocacy to point out that one of the most significant and largest surprise medical bills that Medicare patients face: the full bill for a stay in a skilled nursing facility when the patient’s prior stay in the hospital was called observation or other outpatient designation, rather than inpatient. The surprise bill occurs because Medicare Part A limits coverage for a SNF stay to a patient who was hospitalized as an inpatient for at least three consecutive days, not counting the day of discharge. Although the Medicare program now requires hospitals to inform patients of their status as outpatients. Medicare regulations expressly prohibit patients from appealing observation status. The Center is advocating passage of the Improving Access to Medicare Coverage Act of 2019 (H.R. 1682/S. 753) that it argues could resolve the surprise medical bill issue for Medicare patients by counting all time in the hospital, whether called inpatient or outpatient or observation, as satisfying Medicare’s requirement for a three-day inpatient hospital stay.
Final CMS Ruling on Prescription Drug ‘Step Therapy’
A contentious interplay between Congress and various stakeholders, on the one hand, and CMS on the other, has ended, at least for now, with the department’s finalization of a rule regarding prescription drug “step therapy.” Last November CMS proposed that patients be required to try a cheaper drug before a more expensive drug and that prior authorization be permitted for the use of drugs in six protected classes. Pushback was immediate and forceful. As reported by Modern Healthcare’s Robert King, some congressional lawmakers have urged a step back from step therapy, introducing the Safe Step Act that aims to create a clear process in which a patient or provider can get an exception from either step therapy or prior authorization. “While I understand that step therapy can play an important role in reducing healthcare costs, it does not take into account a patient’s medical history, like whether they tried the medication previously and failed under a different insurance plan,” bill sponsor Rep. Raul Ruiz (D-Calif) said. Now, in the final rule, FierceHealthcare’s Paige Minemyer reports , the department’s scaled-back version “will allow Part D plans to use these utilization management tools for members starting new therapies and in all classes except antiretroviral drugs, codifying existing policy. CMS had initially proposed to allow prior authorization and step therapy in the protected classes without distinguishing between new starts and patients on existing therapies.”
FDA Ends Program Allowing Medical Device Makers to Hide Harm From Patients and Consumers
The FDA has taken a step towards increasing the availability of important information concerning medical devices. As reported by Kaiser Health News’ Christina Jewett, the agency announced it is shutting down its controversial “alternative summary reporting” program and ending its decades-long practice of allowing medical device makers to conceal millions of reports of harm and malfunctions from the general public. “Former FDA official S. Lori Brown said ending the program now is a “victory for patients and consumers. The No. 1 job of the FDA—it shouldn’t be ‘buyer beware’—is to have the information available to people so they can have information about the devices they are going to put in their body.” The decision to terminate the program was part of a statement on increasing transparency about the safety of breast implants. “Makers of breast implants for years were allowed to report hundreds of thousands of injuries and malfunctions out of the public eye, federal records show. FDA spokeswoman Angela Stark said the agency will also end ‘alternative summary reporting’ exemptions still in place for makers of implantable cardiac defibrillators, pacemakers and tooth implants.”
Editor’s Note: As readers have likely observed, one of Caregiving Policy Digest’s most often cited health affairs journalists was The New York Times’ Robert Pear. His sudden death in early May leaves an enormous gap in the supply of information vital to the understanding and development of health system policy. It is not uncommon to hear it said that an individual will be sorely missed, but for those who hunger for information that is accurate, thoughtful, and unbiased, it cannot be said more emphatically than in the case of Mr. Pear.
Recent Data on Preventable Hospital Deaths
First the good news about preventable deaths in U.S. hospitals, as provided by the Leapfrog Group: they have declined from three years ago. The bad news: an estimated 161,250 such deaths still occur each year. As summarized by Modern Healthcare’s Maria Castellucci, “The analysis likely underestimates the number of preventable deaths in hospitals since it only evaluated a subset of safety issues by looking at just 16 safety measures, according to the authors. The analysis used performance data from the 2,620 hospitals assigned a grade in the most recent iteration of the Leapfrog Group’s hospital safety grades, which came out in conjunction with the study. All 16 measures used in the study except for one are CMS measures. Similar to previous iterations, Leapfrog’s newest grades show wide variation in patient safety performance across hospitals. Of the 2,620 hospitals assigned a grade, 832 received an A, 681 got a B, 938 were assigned a C, 160 received a D, and nine got an F. Leapfrog CEO Leah Binder said the number of hospitals with an F grade is lower than previous years. ‘We are seeing fewer hospitals do exceptionally poorly. We are starting to see all hospitals — even ones that are struggling with patient safety — improve.’ The study also found that the risk of avoidable death increased the lower the grade a hospital had. For instance, compared to hospitals with an A grade, the risk of an avoidable death was 88% higher in C hospitals and 92% higher in D and F hospitals.”
Review of Nonpharmacological Interventions for Anxiety and Dementia in Nursing Homes
Irish and Australian nursing school researchers have authored a review of studies that looked at nonpharmacological interventions for anxiety and dementia in nursing homes. As the authors note, “it is not always possible to separate anxiety from other issues such as agitation and depression and this may account for the dearth of studies considering anxiety as the primary outcome for people living with dementia in nursing homes. The aim of this review was to consider if nonpharmacological interventions used to alleviate anxiety in this population were effective and if so, which interventions demonstrate the greatest effectiveness in reducing anxiety symptoms in older adults with comorbid dementia.” The authors’ bottom line: “There remain limited interventions known to reduce anxiety for people living with dementia. The most common interventions used to address anxiety in this population were music therapy and activity-based interventions although there was limited evidence for the efficacy of either intervention. Further research using consistent measurement tools and time points is required to identify effective interventions to improve the quality of life for people living with both dementia and anxiety in nursing homes.”
Post-Hospital Transitions: A New, Longer Timeframe
In a new study from University of Wisconsin and Pennsylvania State nursing school, researchers extend the focus and timeframe with respect to how patients navigate transitions after hospitalization. “Older adults described a complex transition from a state of normal function to loss and then working back to a normal state or having to redefine a new normal. This transition process was longer than described in the literature, often spanning months to years and including multiple illness events and hospitalizations that extended beyond the scope of previous research on transitions among care settings. Our findings reveal the sense of normal function at home was central to older adults description of a transition process. And their description of function extended beyond what has been previously captured by common measures of ADLs. In our study, function was multidimensional, comprising one’s ability to contribute to and engage in all aspects of life. Our participants description of normal function involved engagement both inside and outside the home, and loss of function involved a contracting of both space and contributions/engagements. Our findings indicate ADLs were the last dimension of normal function older adults will lose, often after they had already lost much of their ability to contribute, enjoy, and be free. Moreover, the idiosyncratic experiences of transition our participants described corroborate previous research that suggests function is often an enactment of unique roles, routines, relationships—and includes concepts of effectiveness (contributing) and connectedness (employment). These results underscore the need to further examine function as a multidimensional concept in transitioning older adults and to further consider ways to improve assessment in research and practice.”
Hospital Readmission Reduction Program (HRRP) and Social Determinants of Health (SDOH)
The month of May saw the publication of articles on two related topics—the impact of CMS’ Hospital Readmission Reduction Program (HRRP) and the effort to incorporate social determinants of healthcare (SDOH) in assessing readmission rates. “Hospitals,” reports Modern Healthcare’s Maria Castellucci, “particularly safety net providers, are calling on the CMS to better account for patients’ social risk factors in the long-standing readmissions penalty program, but achieving that anytime soon faces hurdles. ‘We are still getting our arms around the best data to collect on social risk factors and the mechanism to collect it both for the purposes of improving quality measures and their accuracy and validity for use in patient care,’ said Akin Demehin, director of policy at the American Hospital Association. The 21st Century Cures Act gave the CMS authority to change the HRRP to account for patient social risk, so it is possible for the agency to incorporate social determinants of health. The big question is how to do that. The CMS is already separating hospitals by dual-eligibility status but hospitals say that’s just a first step. ‘Rather than wait for more research, the CMS has other data sources it can use now to address social determinants,’ said Dr. Karen E. Joynt Maddox, assistant professor of medicine at the Washington University School of Medicine in St. Louis. ‘The easiest way for the CMS to get this data is via claims, which, along with patients’ dual-eligibility status, contain addresses and the age when they first obtained Medicare coverage. The frequency of address changes can illustrate housing stability and receiving Medicare coverage before age 65 indicates a disability. There are also medical factors hospitals report to the CMS that could indicate social risk factors. For instance, frailty and mental illness are usually indicators of worse health outcomes for a particular condition, and those with worse outcomes tend to be lower income. Getting at the issue by looking at medical conditions is also less political than using social disparities,’ she added, saying, ‘It doesn’t come with the baggage of talking about disparity.’”

Adding to the mix of concerns and considerations about SDOH, University of Michigan Health Affairs bloggers make a case that more evidence is needed to determine the effectiveness of screening for social needs among high-use patients in acute care settings. “Our survey findings illustrate that in Michigan, important barriers must be addressed if SDOH screening is to be further considered or implemented. One key barrier is an underdeveloped evidence base around the effectiveness of screening in such settings. Methodological and study-design weaknesses are widespread in the existing literature, and important questions have yet to be thoroughly investigated. For example, is screening effective in linking patients to needed resources? Does it result in improved outcomes among super-utilizer patients or the general population seen in the prehospital or ED settings? Future research should evaluate not just the impact on health outcomes but also the long-term costs or savings associated with screening. In addition, the lack of community resources for super-utilizer patients identified by survey respondents underscores the question regarding the morality of screening in these settings. Until an expanded evidence base is available, the jury is out on whether SDOH needs screening in acute care settings is a silver bullet or a tool that is gaining momentum without testimony for its effectiveness at improving the health and livelihood of the patients most in need.”
HRRP: Changes Needed to Improve Patient Care
The two preceding articles presuppose the continuation of the HRRP in its current form. Two additional articles—one a scathing attack, the other a more measured critique— question the program’s very desirability if it does go forward unchanged. “The HRRP,” write Harvard population medicine professor Stephen Soumerai and Minnesota lawyer and national health advocate Kip Sullivan, “was imposed upon Medicare by the Affordable Care Act. Its goal makes sense: reduce the number of patients readmitted to hospitals soon after being discharged. But its approach—penalizing hospitals millions of dollars if their rate of readmissions within 30 days exceeds an arbitrary threshold—makes no sense at all. The HRRP and other federal ‘pay for performance programs’ were under fire before they began. Evidence suggested that some hospitals would try to avoid penalties by not readmitting patients within the 30-day window, or if they showed up in the emergency department during that time would treat them there and send them home or place them in so-called observation units rather than admitting them to the hospital. There were also indications that these kinds of programs would disproportionately harm socially disadvantaged individuals. Influential health policy experts either ignored this evidence or downplayed it. Large and rigorous studies have shown that death rates among hospitalized individuals rose after the HRRP began, likely because some critically ill patients were not re-hospitalized and given the inpatient care they needed. Equally worrisome, the discriminatory penalties were disproportionately levied on so-called safety-net hospitals that care for a high number of poor, uninsured, and very sick people. Lazy thinking by legislators and advisers must stop. Policymakers must adopt a code of ethics analogous to the oath doctors swear to first do no harm. Just as we require controlled trials showing that new drugs are safe and effective before they can go on the market, we need to insist on the same standards for health policies.

While echoing some of the HRRP reservations expressed by Soumerai and Sullivan, several other physician analysts, including frequent HRRP observer Dr. Karen E. Joynt Maddox, offer a more sanguine view in the New England Journal of Medicine. “How can we strengthen the HRRP to mitigate potential unintended consequences and ensure that the program improves care quality and patient outcomes? Rather than using only inpatient readmission rates to evaluate hospital performance, the HRRP could use a ‘return-to-hospital’ metric that also includes rates of ED visits and observation-unit stays within 30 days after discharge. Such a measure would strengthen hospitals’ incentive to focus on improving care transitions and post-discharge care to reduce unnecessary returns to the hospital. The HRRP’s risk-adjustment methods could also be improved, directly adjusting for dual-enrollment status in risk models would allow all hospitals to receive similar ‘credits’ for caring for vulnerable patients. At the same time, adding covariates such as prior hospital utilization, functional status, and frailty would meaningfully improve risk models, particularly for poor and disabled populations. More broadly, the ongoing debate about the HRRP underscores the consequences of implementing national policies with no control group and no plan for iterative improvement. For this reason we believe any change in the HRRP should be made in the context of a robust evaluation effort to determine its effect on patient experience, care quality, and outcomes. Improvements could reboot the HRRP and transform it from a regressive penalty program to a progressive one that improves patient care.”
Medical-Legal Partnerships to Advance Care of Older Adults
April’s Caregiving Policy Digest included mention of a new guide to the formation of medical-legal partnerships to advance the care of older adults with complex needs. Four Health Affairs bloggers have now added further examples and discussion regarding the integration of legal services into healthcare delivery and their role in ameliorating the impact of such events as mild cognitive impairment, falls risks, multimorbities, caregiver burdens, and elder abuse and exploitation.
NASEM Workshop on AI’s Impact on Independent Living
The National Academy of Medicine has published the proceedings of an October 2018 workshop that examined the state of the art and knowledge about artificial intelligence (AI) and explored its potential to foster a balance of safety and autonomy for older adults and people with disabilities who strive to live as independently as possible. One of the sessions featured an interview with quadriplegic Brian Barth, director of the Administration for Community Living’s Small Business Innovation Research program that develops technology for older adults and people with disabilities. Describing his extensive use of new transportation and communication technologies, Barth observed that the technologies’ most significant impacts on his life are independence and safety. Bard described his ability to drive as key to his autonomy. “The biggest thing that I would like to see is autonomous transportation. I want a vehicle I can roll in and that can drive me to work.” The technology Bard uses apart from transportation “has come a long way. The ability to use (my) current phone from a distance is a relief. If (I) am in bed and the home health aide does not show up, (I) can ask the phone to call someone. However, what I really want,” he said, “is a robot sitting in the corner that can come get me up.”
Family Caregiver Roles in Medical Product Development
Another proceedings publication , this one emanating from the National Alliance for Caregiving and the Lead Coalition, discusses the results of a November 2018 workshop focused on family caregiver roles in medical product development. The report examines each stage of medical product R&D, building on existing patient engagement models to highlight where caregiver insights might be most useful.
2018 Profile of Older Americans
The Administration for Community Living has announced the availability of the 2018 Profile of Older Americans. Highlights of the extensive statistical analysis include: more than 15% of the U.S. population are older adults; the age 85+ population is projected to increase 123% from 2017 to 2040; currently, persons reaching age 65 have an average life expectancy of an additional 19.5  years; and approximately 28% (14.3 million) of older persons live alone.
Medicare’s New Star Ratings for Rehab Services
Kaiser Health News’ Judith Graham offers a comprehensive guide to Medicare’s new star ratings for rehabilitation services, part of the federal government’s Nursing Home Compare website. The website now includes ratings for skilled nursing care and physical, occupational or speech therapy, using 13 rehab care measures. As a result, website users will find three separate ratings for the quality of residents’ care: one for overall quality (a composite measure); another one for “short-stay” patients (people who reside in facilities for 100 days or less getting skilled nursing services, and physical, occupational, or speech therapy); and a third for “long-stay” patients (people who reside in facilities for more than 100 days).
Alexa, et al.: Valuable Adjunct or Profit-Driven, Outsourced Health Care
The last line of Broadway’s iconic My Fair Lady—“Eliza, bring me my slippers”—might today morph into “Alexa, bring me my slippers” or, if Amazon’s vision prevails, “Alexa, what was my last blood sugar reading?” Last month, writes Kaiser Health News editor-in-chief Elizabeth Rosenthal, the behemoth retailer “opened a new health care frontier: Alexa could now be used to transmit patient data. Using this new feature—which Amazon labeled a ‘skill’—a company named Livongo will allow diabetes patients—which it calls ‘members’—to use the device to query their last blood sugar reading, blood sugar measurement trends, and receive insights and Health Nudges that are personalized to them. Private equity and venture capital firms are in love with a legion of companies and startups touting the benefits of virtual doctors’ visits and telemedicine to revolutionize health care, investing almost $10 billion in 2018, a new record for the sector. Without stepping into a gym or a clinic, a startup called Kinetxx will provide patients with virtual physical therapy, along with messaging and exercise logging. And MavenClinic (which is not actually a physical place), offers online medical guidance and personal advice focusing on women’s health needs. “But,” worries Rosenthal, “it remains an open question whether virtual medicine will prove a valuable, convenient adjunct to health care. Or, instead, will it be a way for the U.S. profit-driven health care system to make big bucks by outsourcing core duties—while providing a paler version of actual medical treatment? After all, my doctors have long answered my questions and dispensed phone and email advice for free—as part of our doctor-patient relationship—though it didn’t have a cool branding moniker like telehealth. And my obstetrician’s office offered great support and advice through two difficult pregnancies—maybe they should have been paid for that valuable service. And if virtual medicine is pursued in the name of business efficiency or just profit, it has enormous potential to make health care worse (by) losing the support that has long been a crucial part of the profession. There are programs to provide iPads to people in home hospice for resources about grief, and chatbots that purport to treat depression. Maybe people at such challenging moments need—and deserve—human contact?” 
A Look at ‘Opportunity Cost’ and the Benefits of Health Technology
Health Affairs bloggers Nathan Handley and Judd E. Hollander offer a somewhat different perspective on the potential benefits of advances in health technology. “Opportunity Cost: The Hidden Toll of Seeking Health Care” is the focus of the writers’ call to pay greater attention to the importance of optimizing convenience in the delivery of healthcare services. In that connection, they argue, physically moving care closer to patients using urgent care centers and walk-in clinics, bringing providers of the patient’s homes through Hospital at Home programs and physician home visits, and leveraging connected health tools such as telemonitoring can help reduce patient, as well as caregiver, opportunity cost burdens. “Opportunity cost is an economics term that refers to the loss of potential benefits from other options when one option is chosen. Consider the case of a 45-year-old working mother with hypertension. She has an appointment to see her primary care physician at 10 a.m. on a Tuesday—the earliest available appointment on the only day she can take time off work. After dropping her kids off at school, she drives 40 minutes across town (and a toll bridge) in morning rush hour. She parks ($20) and arrives at the appointment early, but isn’t seen by her provider until 10:45. She spends 15 minutes with the physician, reviewing her home blood pressure measurements; her hypertension remains adequately controlled, without any need to adjust her medications. She then drives 30 minutes to work (paying for another toll bridge), arriving just before noon. Her insurance coverage is good—the copayment for the visit was $10—and the appointment took only 15 minutes. But when considering the total cost of the visit, how do we account for the four hours of lost productivity, tolls, parking, gas, and general disruption to her routine—all things that may heavily influence how she seeks care?
A Doctor’s Journey With Broken Health Care
“Even doctors can’t navigate our broken health care system.” That’s how Kaiser Health News’ Judith Graham summarizes Dr. Hasan Shanawani’s account of his experience tending to his 83-year-old father, also a physician, who was hospitalized with a spinal fracture. “Instead of being admitted as an inpatient, his dad was classified as an ‘observation care’ patient—an outpatient status that Shanawani knew could have unfavorable consequences, both medically and financially. Shanawani took to Twitter to unleash a barrage of posts describing his maddening inability to ascertain why his dad, who had metastatic stage 4 prostate cancer and an unstable spine, was not considered eligible for a hospital admission. Why had an emergency room doctor told the family the night before that his father met admission criteria? Within hours, Shanawani’s posts were widely shared and other people, some of them also doctors, recounted similar experiences. Within days, he had thousands of followers, up from fewer than 100 before his tirade. Ultimately, a physical therapist made it possible for Shanawani’s father to be admitted to the hospital once he failed a test she administered. And a palliative care nurse gave the family the sense of being cared for, which they so desperately needed. ‘She was a “one-in-a-million” person,’ said Shanawani, weeping as he spoke of her. ‘She said ‘We will fix this, we will figure this out with you, we’re working on the same side of the table.’”
Parity in Mental Health and Addiction Care? Not Exactly
The 2006 Mental Health Parity and Addiction Equity Act was intended to enable Americans to access mental health services as readily as they could obtain care for physical ailments. But as Bloomberg Businessweek’s Cynthia Coons and John Tozzi report , the reality has been anything but parity. “Insurers,” they write, “are denying claims, limiting coverage, and finding other ways to avoid complying with the law. In 2010 the Affordable Care Act became law, mandating that commercial health insurance plans offer mental health benefits. Combined with the parity act, federal law appeared to guarantee that Americans would have access to mental health services like never before. And there are signs the laws have helped. A federal report published in February 2019 concluded that the law increased the use of outpatient addiction treatment services and, for those already getting mental health care, the frequency of their visits. But patients and their families say insurers use more subtle methods to stint on treatment. Their directories of providers are padded with clinicians who don’t take new patients or are no longer in an insurer’s coverage network. They request piles of paperwork before approving treatment. They pay mental health clinicians less than other medical professionals for similar services. How can insurers continue to violate the letter and spirit of the law? Partly because the parity act sets ambiguous standards, advocates say, and doesn’t have teeth. The federal rules don’t say how to measure whether a health plan’s network of mental health providers is sufficient, for example, so insurers have discretion over what they deem is an adequate network. More important, there’s no one agency or office responsible for enforcing the rules. The relevant authority may be the U.S. Department of Labor, or the U.S. Department of Health and Human Services, or a state insurance regulator, depending on the health plan. ‘It’s hard to define who owns this problem when there’s so many different entities and people responsible for enforcement,’ says Lindsey Vuolo, associate director of health law and policy at the nonprofit Center on Addiction.’”
Privileged and Connected: The Struggle to Access Life-Saving Mental Health Care
An especially harrowing account of one woman’s quest for treatment of depression appeared in a first person Health Affairs post in late April. Ashley R. Clayton, a research director in Yale’s psychiatry department, writes that during her worst moments, “I was close to hopeless and all but certain that I was going to die by suicide. Although I strongly believe that mental illness should be treated like any other medical illness, I am painfully aware of the ways that it is not—both inside and outside of the medical community. When someone dies from cancer, we know it is the treatment that failed in fighting the illness. But when someone dies by suicide as a direct result of mental illness, many speak as if it is not the treatment that failed, but the person. I went through a life-threatening depression, navigating a complicated health care system in search of an effective treatment. Luckily, I find myself on the other side, life mostly intact, but it is uncomfortably easy to imagine a very different outcome. The amount of pure luck required to save my life terrifies me. I am deeply grateful for the efforts of my doctors, and I also do not want to minimize the role my personal strengths and resources played in this narrative. But that’s the thing: I have some of the most talented and compassionate doctors, and I—with all of my knowledge and training, good insurance, and role as a well-educated white woman working in one of the world’s top medical schools—was better positioned than most to navigate the system. And yet I barely survived. Securing access to the care I needed was almost impossible. As a mental health and health policy researcher, I am left to wonder: How can others less privileged and connected than I am find their way to the other side?”
The Best Time to Visit Your Doc
“Don’t Visit Your Doctor In the Afternoon.” So reports Northwestern medical school Prof. Dr. Jeffrey A. Linder. Drawing upon the results of a recent JAMA study indicating that doctors ordered fewer breast and colon cancer screenings for patients later in the day, compared to first thing in the morning, Linder posits “decision fatigue”—the progressive erosion of self-control as we make more and more choices—is a contributing factor in the study’s findings. “In primary care, doctors run late because the workload is impossible. To do everything we’re supposed to for a typical daily patient load, primary care doctors should spend 11 to 18 hours a day providing preventive and chronic care, never mind addressing new problems. We spend one to two hours updating the electronic health record for every hour we spend with patients. To try to fit in what we can, we end up feeling like Lewis Carroll’s White Rabbit, constantly behind, checking our watches, harried, rushing from patient to patient. Your doctor is not immune. In a 2014 study, my fellow researchers and I found doctors prescribed fewer unnecessary antibiotic prescriptions for respiratory infections first thing in the morning, but that unnecessary prescriptions gradually increased over the day. We found the exact same doctor, caring for the exact same patient, had a 26 percent higher chance of writing an antibiotic prescription at 4 p.m. compared to 8 a.m. As doctors got more fatigued, they defaulted to the easy thing: just writing an antibiotic prescription rather than taking the time to explain to patients why it is not necessary. As the day went on, doctors’ fears of disappointed, dissatisfied, angry or confrontational patients may have loomed larger and larger. The will to confront those fears may have dwindled and more patients left the clinic with unnecessary antibiotics. This same pattern of doctors defaulting to the easy thing later in the day has appeared for decreased influenza vaccinations, increased opioid prescribing for back pain and decreased physician hand-washing. We doctors like to think of ourselves—and the public might like to think of us—as rational decision makers, but depending on the time of day, treatments change.”
Occupational ‘Burnout’ Included in WHO Revision of Classification of Diseases
Two weeks after Dr. Linder penned his distress signal, came word that the World Health Organization had issued its own acknowledgment of growing occupational “burnout” by including it in the 11th Revision of the International Classification of Diseases. Terming it an occupational phenomenon, not a medical condition, WHO defined it as “a syndrome conceptualized as resulting from chronic workplace stress that has not been successfully managed. It is characterized by three dimensions: feelings of energy depletion or exhaustion; increased mental distance from one’s job, or feelings of negativism or cynicism related to one's job; and reduced professional efficacy.”
Are Generic Drugs Safe?
Americans consume billions of generic drugs with confidence that they will be safe and effective, indeed, as safe and effective as the original and more expensive patented versions. Katherine Eban, author of the new generic drug industry expose Bottle of Lies: The Inside Story of the Generic Drug Boom is out to shake that confidence with a dissection of FDA’s oversight efforts aimed at ensuring a high standard of manufacturing practices. “America needs generic drugs,” she writes . “They make up 90 percent of the American drug supply. Without them, every large-scale government health program—the Affordable Care Act, Medicare Part D, the Veterans Health Administration, and charitable programs for the developing world—would be unaffordable. The FDA, which approved more than 1,000 new generic drug products last year, faces a vast challenge in safeguarding these medications. Nearly 40 percent of all our generic drugs are made in India. Eighty percent of active ingredients for both our brand and generic drugs come from abroad, the majority from India and China. America makes almost none of its own antibiotics anymore. Of course, overseas manufacturing can work perfectly well and the FDA contends that it has a reliable review system for all approved drugs. My reporting on the generic drug industry over the last decade, however, has led me to expose what was going on behind the boardroom doors at generic-drug companies. Some companies have encouraged data fraud as the most profitable path to securing approvals from regulators, and have used deceit to hold the FDA’s investigators at bay. In the United States, FDA investigators typically show up unannounced to inspect plants. But overseas, the FDA has opted to announce the vast majority of its foreign inspections in advance. Overseas plants even ‘invite’ the FDA to inspect; the investigators then become the company’s guests and agree on an inspection date in advance. The resulting inspections are largely ‘staged’ say a number of FDA staff members. With advance notice and low-cost labor, the plants can make anything look like anything. Most Americans agree that our drug supply is in crisis. But the crisis they point to is that of cost: brand-name drugs that are unaffordable because of corporate greed and a labyrinth of deals between drug makers, drugstore chains and insurance companies. One response has been to push for more, cheaper generics made available as quickly as possible. But that solution has come with a quality crisis that has been largely invisible to American consumers.”
The Epidemic of Polypharmacy
Add one more medication concern to the generic prescription drugs worry: medication overload. Health Affairs bloggers Shannon Brownlee and Terry Fulmer highlight a new report from the Lown Institute that “chronicles the epidemic of polypharmacy in the United States (polypharmacy is typically defined as taking five or more medications concurrently). More than 40 percent of older adults are on five or more prescription medications, a threefold increase from twenty years ago. When over-the-counter drugs and supplements are included, nearly 20 percent of older people take ten or more drugs, and it is not unusual for some older patients to be on more than two dozen different medications. The vast majority of drugs are prescribed by clinicians with the best of intentions, and for many people with multiple chronic illnesses, several drugs may be needed. However, every additional drug increases the risk of harm. Every day, 750 people age sixty-five and older are hospitalized for an adverse drug event from one or more medications. Over the past decade, older people sought medical treatment for a drug-related side effect more than 35 million times. The Lown Institute estimates that if nothing is done, medication overload will lead to 150,000 premature deaths over the next decade and will reduce the quality of life for millions of older people. In addition, there will be 4.6 million hospitalizations for serious adverse drug events related to medication overload and 74 million outpatient visits, at a cost of at least $60 billion.” Brownlee and Fulmer detail the emerging efforts by the Institute, in association with the Gordon and Betty Moore and John A. Hartford Foundations, to address the overload problem. Already underway is Hartford’s Age-Friendly Health Systems initiative that includes a major focus on medication management. Absent vigorous steps, the bloggers warn, “the problem of over medication will not only continue, it will cascade. The older people in our lives deserve better.”
Caregiver Exploitation Revealed in Residential Care Homes
“It’s a classic tale of human greed.. Their entire business model is predicated on not making payroll. It relies on people being willing to work for 24 hours a day for less than a dollar an hour. Only trafficked people will put up with that.” Quoting UCLA Labor Center’s legal manager Tina Koontz. Jennifer Gollan presents a disturbing account of the terrible treatment of caregivers in all too many residential care facilities. “A burgeoning multibillion-dollar elder care industry,” Gollan writes, “is enabling operators to become wealthy by treating workers as indentured servants. Across the country, legions of these caregivers earn a pittance to tend to the elderly in residential houses refurbished as care facilities, according to an investigation by Reveal from The Center for Investigative Reporting. The profit margins can be huge and, for violators of labor laws, hinge on the widespread exploitation of thousands of caregivers, many of them poor immigrants effectively earning $2 to $3.50 an hour to work around the clock. The federal hourly minimum wage is $7.25. Reveal interviewed more than 80 workers, care-home operators and government regulators and reviewed hundreds of wage theft cases handled by California and federal labor regulators, workers and local district attorneys. The investigation found rampant wage theft has pushed a vast majority of these caregivers into poverty. Workers are left feeling desperate and trapped. Many caregivers say they rise before daybreak to cook meals, shower residents and scrub toilets. At night, they are deprived of sufficient sleep because they have to wake to change adult diapers, dispense painkillers, return wandering dementia residents to their beds and shift the bedridden every two hours to thwart bedsores. Workers describe sleeping in hallways and garages, on couches and the floor. Some care homes deduct $25 a day from caregivers’ paychecks for ‘lodging.’ Across the country, states are charged with regulating board-and-care facilities. State and federal regulators say privately that they need many more investigators and lawyers to chase down scofflaws and force them to pay. At least 20 companies providing care for the elderly, disabled and mentally ill in California continue to operate illegally—many of them under their original names—after ignoring judgments for back wages and penalties totaling more than $1.4 million.”
Compassion Matters
Physicians Stephen Trzeciak and Anthony Mazzarelli, practicing in Camden, New Jersey’s Cooper University Health Care, firmly believe that healthcare is in the midst of a “compassion crisis.” But, they write in a Washington Post article, “This raises a pivotal question: Does compassion really matter?” To answer their question the two physicians undertook a two-year journey through the biomedical literature; the results are contained in their new book entitled “Compassionomics: The Revolutionary Scientific Evidence That Caring Makes a Difference.” “After curating all the scientific evidence, we found undeniable signals in the data that compassionate care is associated with vast benefits for patients across a wide variety of physical conditions, such as chronic low back pain, diabetes and even recovery from the common cold. Compassion is also associated with better psychological outcomes for patients, including relief from depression, anxiety and post-traumatic stress disorder. One mechanism by which compassion for patients can improve patients’ health is through better patient self-care, such as better patient adherence to prescribed therapy. When health-care providers care deeply about patients, and the patients feel that, research shows they are more likely to take their medicine. There is also emerging evidence that more human connection in health care could be an effective way to combat the burnout epidemic that is rampant among those who provide care. Compassionate care can be a fulfilling experience for health-care providers that help build resilience and resistance to burnout. In other words, compassion is good for both the giver and the receiver.” How much does compassion cost? “Research shows that it takes only 40 seconds for a health-care provider to communicate compassion—‘I know this is a tough experience to go through,’ ‘I am here with you,’ and ‘We will go through this together.’ The science is clear: Compassion matters—in not only meaningful but also measurable ways. In addition to compassion being the right thing to do, science shows it is also the smart thing to do. Science points to compassionate care as a powerful, evidence-based therapy that is essentially cost free.”
Addressing Ageism in Medicine
UCSF geriatrician and Prof. Dr. Louise Aronson would no doubt concur with the call for greater compassion in healthcare, with, perhaps, the need being most pressing in confronting ageism in medicine. Aronson’s new book “Elderhood,” as Kaiser Health News’ Judith Graham reports , laments the short shrift social society gives to older age. “This distinct phase of life doesn’t get the same attention that’s devoted to childhood. And the special characteristics of people in their 60s, 70s, 80s and beyond are poorly understood. Aronson proposes a better way. Older adults would be seen as ‘different than,’ not ‘less than.’ The phases of later life would be mapped and expertise in aging would be valued, not discounted. ‘It’s not like the stages of child development’ Aronson observes in an interview with Graham—‘being a baby, a toddler, school-age, a teenager—which occur in a predictable sequence at about the same age for almost everybody. People age differently—in different ways and at different rates. Sometimes people skip stages. Or they move from an earlier stage to a later stage but then move back again.’” Aronson emphasizes five critical elements—the five P’s—of a reimagined approach to healthcare: the whole person, not the disease; prevention through exercise; purpose, i.e., the goals and values of the older patients; individual priorities; and perspective, i.e., making changes to keep doing one’s important things. On the bright side, Aronson concludes, “There’s a much larger social conversation around aging than there was five years ago. And that is making its way to the health system. Surgeons are thinking more and more about evaluating and preparing older adults before surgery and the different kind of care they need after. Anesthesiologists are thinking more about delirium, which has short-term and long-term impact on older adults’ brains. And neurologists are thinking more about the experience of illness as well as the pathophysiology and imaging of it. Then you have the age-friendly health system movement, which is unquestionably a step in the right direction. And a whole host of startups that could make various types of care more convenient and that could, if they succeed, end up benefiting older people.”
Caregiver Conversations:
 A Day of Learning, Support, and
Information Exchange
The goal of this event is to listen and learn directly from caregivers who reside in the San Francisco Bay Area’s Contra Costa County. Family Caregiver Alliance is collaborating with local community services providers and the Contra Costa County Area Agency on Aging to host this event. FCA has embarked on preparing Bay Area county-specific reports documenting the state of caregiving and raising awareness about the growing need for support for family caregivers. We anticipate 150+ attendees.
When: Wednesday, June 25, 9:30 a.m. to 3 p.m. (PT)
Where: Pleasant Hill Community Center
320 Civic Drive, Pleasant Hill, CA 94523
Information: Click here
Free FCA Webinar
 Long-Term Care in California: What Is It and Who Pays for It?
California Advocates for Nursing Home Reform staff attorney Tony Chicotel will examine the various levels and settings for long-term care in California, including some of the important rules and issues involved. In addition, he will focus on payment options and how individuals can identify good providers and maximize their care coverage while minimizing their expense.
When: Wednesday, June 26, 11 a.m. to 12 noon (PT)
Registration: Click here
FCA TWEETS @CaregiverAlly
For more information on the proposed California Care Corps mentioned in the Tweet, read the California Health Report article and follow @nihalsatyadev and #CACareCorps on Twitter.
Follow Family Caregiver Alliance / National Center on Caregiving @CaregiverAlly
and Executive Director Kathleen Kelly @KKellyFCA.
Professional Studies
Graduate Studies

Editor: Alan K. Kaplan, (attorney and health policy consultant)
Contributor: Kathleen Kelly (executive director)
Layout: Francesca Pera (communications specialist)

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FCA's Connections e-newsletter focuses on issues and information important to family caregivers. The newsletter regularly covers tips, articles, and helpful advice that can assist families with the numerous daily care tasks that caregiving for loved ones presents—including the often overlooked “caring for yourself.” While much of the content can prove helpful to caregivers nationwide, the events included are local to the six-county region of FCA’s Bay Area Caregiver Resource Center.

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