Vol. 19, No. 1
January 11, 2019

In This Issue: looking Back, looking ahead :: Medicare for all (?) :: a new caregiving Advisory Council :: treating the geriatric ER patient :: psychiatric advance directives :: advice for complex care delivery :: Medicaid managed care beneficiary protections :: more peace and quiet in the hospital room :: the toll of senior loneliness :: companioning the dying :: caregiving as a PTSD precursor :: love conquers memory loss :: a comedian’s take on grief :: accepting caregiving :: middle class health cost woes :: emigrating for cancer care
A New Year: A Look Back, a Look Ahead
As the new year begins, and in an effort to highlight some themes and trends that may be discernible at such annual transitions, Caregiving Policy Digest takes a look back and look ahead at developments related to patient healthcare and family caregiving. Looking back on 2018, the year’s big story encompassed the varied strands of fallout emanating from 2017’s historic early-morning Senate rejection of legislative Obamacare repeal efforts. What ensued was a mix of events that, on the one hand, administratively threatened Obamacare’s ongoing viability, and, on the other hand, demonstrated its political strength as a healthcare expansion measure. These events culminated, first, in a midterm election that saw Medicaid garner major support even in conservative states, along with a Democratic retaking of control of the House of Representatives—thereby reinforcing the finality of the 2017 anti-repeal vote—while just in time for Christmas, Texas District Court Judge Reed O’Connor gifted the Trump administration an Obamacare piñata in the form of a decision declaring the entire ACA unconstitutional.

Putting such a mix into a longer historical perspective—and borrowing from and rephrasing one of Dr. Martin Luther King, Jr.’s, most memorable observations—it might well be said that the arc of American healthcare is uneven, but it bends towards coverage. Medicare, Medicaid, CHIP, Part D prescription drug coverage, Obamacare: each brought Americans a step closer to what every advanced country enjoys, namely, some form of universal healthcare. In the case of Medicare and Medicaid, while both had been passed only after years of political warfare over the role of government in the health system, both quickly became firmly anchored in the American way of life, achieving almost universal acceptance as bedrock American institutions. Not so with Obamacare; passed without a single Republican vote, the program has endured relentless attacks since its passage, culminating in the Trump-congressional-judicial drives to strangle it out of existence. As Yale Law School’s Abby R. Gluck (Prof.) and Erica Turret (student) observed in a New York Times op-ed, “The ACA has been the most resilient statute in modern American history. It has survived two major Supreme Court challenges, more than 50 attempts to repeal it, state reluctance to obey it, and relentless administrative sabotage.” But, however weakened by the onslaught, in the wake of the 2018 midterm state and federal elections and the movement toward greater insurance availability and patient protections for all Americans, it is now virtually inconceivable that much of Obamacare will not survive, in some form and however fitfully.
In the short term, as the new year gets underway, looming debates will proceed from 2018’s unfinished business:

  • The ultimate fate of U.S. District Judge O’Connor’s decision, whose implementation has been stayed pending the completion of a Circuit Court appeal and, most likely, a trip to the Supreme Court

  • The future of Medicaid work requirements and Medicaid restructuring — In this connection, Maine’s new governor, Janet Mills, on her first day in office, finally set her state on the road to Medicaid expansion by reversing her predecessor’s diehard resistance to complying with decisive referendum-based voter support. At the same time, the state’s former top health official Mary Mayhew, a staunch opponent of Maine Medicaid expansion and tapped just three months ago to become CMS’s deputy Medicaid director, announced her tenure would be very short, heeding a call to work for Florida’s new anti-expansion Republican governor Ron DeSantis.

  • The ever-increasing costs of prescription drugs and the implication of new Medicare Advantage dispensing rules that could limit patient access to particular and justifiably preferred medications

  • How best to incorporate social determinants of health care into healthcare delivery systems, building upon HHS Secretary Alex Azar’s recently expressed expansive vision while confronting existing legislative barriers

  • How to assure pre-existing condition coverage for all Americans — Everybody says they are for it but the devil is most definitely in the details.

  • How to tackle the menacing receipt of “surprise” out of network hospital or ER bills — Legislative fixes are expected to get attention in the new Congress, particularly in the wake of a December call by nine major organizations representing health insurers, employers, and consumers for federal unexpected billing protection. Notably absent from the list, reported Modern Healthcare’s Shelby Livingston, were hospital association CEOs who wrote that “health plans’ inadequate provider networks for emergency care is one of the ‘root causes’ of surprise medical bills.”

  • How to pursue answers to the mysteries of cognitive disease, most especially Alzheimer’s — Late 2018’s enactment of the BOLD Act, with near unanimous support, reflects the increasing energy behind the drive to alleviate the Alzheimer/dementia-wrought devastation. As AARP reports, the BOLD Act, among other things, authorizes the CDC to spend $20 million a year for five years to “establish centers of excellence dedicated to promoting the best ways to effectively deal with Alzheimer’s and to help caregivers better understand and address dementias.”

  • How to improve conditions for residents in long-term care and expand opportunities for home and community-based support services — In late 2018 developments, CMS, responding to news coverage of abuse, neglect, and substandard care at facilities across the country, announced heightened oversight of SNF staffing levels; at the same time, acting under authority of the 2014-enacted Skilled Nursing Facility Value-Based Purchasing Program, instituted reimbursement cuts and bonuses to nearly 15,000 SNFs based upon their rates of early readmission to hospitals.

  • How to maximize the ability of technological breakthroughs to improve the daily lives of the aging, infirm, and their caregivers

  • How to maximize the promised benefits of telehealth and patient data interoperability without imposing frustrating burdens on users

  • And finally, how to ease the terrible burdens many Americans, including family caregivers, incur from the unpredictable, uncoordinated, and unaffordable healthcare system that all too often awaits them in their most vulnerable moments
The Question of ‘Medicare for All’
“Medicare for all” will resonate in the new year as a political slogan and prescription for change, but beyond House hearings promised to newly elected progressive Democrats, the jump from the current employer-based-public hybrid system to some form of unified, single-payer program is clearly presently unattainable—given the current House-Senate split and the current occupant of the White House. Moreover, the fight is not only between Democrats and Republicans but, as Politico’s Adam Cancryn reports , “the united front that helped Democrats save Obamacare just a year ago is falling apart over single payer healthcare. Deep-pocketed hospital, insurance and other lobbies are plotting to crush progressives hopes of expanding the government’s role in healthcare. ‘We want to continue promoting the idea of accessibility and improving the Affordable Care Act,’ said incoming Ways and Means Committee Chairman Richard Neal. ‘That would be the primary goal that we have.’ It’s a sentiment shared by the major lobbyists who fought alongside Democrats against Obamacare repeal and now want to reap the benefits. These interest groups contend that, after a decade of upheaval in healthcare, the public would prefer simple fixes that strengthen the ACA over a headlong rush into another dramatic overhaul of the system.”  
RAISE Act Family Caregiving Advisory Council on the Horizon
Amid all of these pressing public policy concerns that will occupy stakeholders in 2019, the needs of family caregivers are certain to build upon the momentum for attention and action apparent in the last 12 months. The beginning of 2018 saw passage of the RAISE Act ; following that event, it seemed that not a week went by without a major print and broadcast focus on the enormous emotional, financial and health stresses family caregivers undergo in assisting their loved ones. The new year should bring the appointment of a RAISE Act-mandated Family Caregiving Advisory Council , thereby accelerating the focus on caregiving issues and facilitating the formulation of a broad national strategy to help families cope with the exploding burdens of age and infirmity.
Crystal balls are fragile objects—as are the predictions they supposedly yield. After one of the wildest political years in a very long time, culminating in a Defense Secretary’s ouster/resignation and 1,000 point swings in the Dow Jones industrial average, one most certainly approaches soothsaying with hat in hand.
Caring for Older Patients in Emergency Rooms
There are approximately 5,000 emergency rooms in the United States; all of them face the need to treat increasing numbers of elderly injured or ill individuals seeking care amid the noise, frenzy, and glaring lights of the ER setting. Of the total number of ERs, reports the Washington Post’s Marlene Cimons, 22 have thus far become accredited by the American College of Emergency Physicians based upon their providing a comprehensive and standardized approach to treating geriatric patients. “Many emergency departments,” Cimons writes, “while effective in dealing with acute problems, don’t always look at the big picture when comes to older patients. This means comprehensive screening procedures to check all medications and health history, as well as conditions at home, with the aim of not having to admit them to the hospital. Hospitalizing the elderly brings its own risk, and many of these patients have difficulty returning to their earlier functioning state. While Holy Cross Hospital in Silver Spring, Maryland, has not yet sought accreditation, its innovative geriatric ER was among the very first to be established as a center within the ER department. Holy Cross has installed walls to separate its treatment bays, rather than curtains, to ensure added privacy and quiet. Older patients are assigned cots with thicker mattresses and given heated blankets, and have access to special speakers that make it easier to listen to music or watch TV, and telephones and remotes with large buttons. The area features softer lighting, handrails, and nonslip floors.”
Psychiatric Advance Directives: A Mental Health Crisis Tool
Perhaps most vulnerable to the tribulations of an ER are those, of all ages, who present with severe psychiatric crises. As Pam Belluck reports in the New York Times, these patients are increasingly being offered a pre-crisis tool indicating what should and should not be administered in the event a psychotic event triggers an ER admission. The tool: the Psychiatric Advance Directive (PAD). “Increasingly, patients, advocates and doctors believe such directives could help transform the mental health system by allowing patients to shape their care even when they lose touch with reality. Hospitals must put them in a patient’s medical records and doctors are expected to follow them unless they document that specific preferences aren’t in the patient’s best medical interest. Some doctors and hospitals are wary that the documents could tie their hands and discourage treatment they consider warranted. Some worry the directives will not be updated to reflect medical advances. Still others question whether people with serious psychiatric conditions are ever capable of lucidly completing such directives. ‘(But) PADs could be a very important tool to minimize hospitalization and minimize involuntary commitment’ said Cherene Allen-Caraco, CEO of Promise Resource Network, a peer-counseling organization in Charlotte, North Carolina. ‘By letting patients give permission beforehand to be committed to hospitals they prefer, the directives can avoid an arduous court-ordered commitment process—traumatic for patients, especially if they are handcuffed by police.’” Belluck’s piece includes vignettes of the experiences of several individuals who have availed themselves of the PAD. “Steve Finger, who has bipolar and borderline personality disorders, knows when he is on the verge of a mental health crisis: the female voice he hears incessantly in his head suddenly shuts up, and the hula hoop he gyrates while walking to the grocery store stops easing his anxieties. Mr. Singer’s executed PAD lists his preferred hospital, five psychiatric medication he’ll accept and two he won’t because they make him excitable. It says he rejects electroconvulsive shock therapy and refuses to be on a locked ward unless he or a trusted person says he intends to harm himself or others.”
Complex Care Needs Addressed in New Resource Guide
Moving from acute, emergency care to the other end of the spectrum—ongoing care for complex conditions and long-term services and supports—resources for addressing these needs come from several organizations. Three—the National Center for Complex Health and Social Needs, the Center for Health Care Strategies, and the Institute for Healthcare Improvement—have published a “Blueprint for Complex Care,” an extensive guide to maximizing the enormous amount of U.S. health expenditures that are concentrated on a small percentage of the population for whom behavioral health and social needs are major contributors to poor health outcomes. The document analyzes the ongoing challenge by focusing on the strengths and weaknesses of various aspects of complex care delivery, including standards of practice, the existing knowledge base, and funding and supporting policies. A total of 22 recommendations emerge from the authors’ analysis.
Protecting Medicaid Recipients’ Rights in Managed Care
Meanwhile, from the National Center for Law and Elder Rights and Justice in Aging comes an important advocacy tool for assuring beneficiary protections as states increasingly move their Medicaid recipients into managed care for both short-term needs and long-term services and supports. The organizations’ Issue Brief details beneficiaries’ rights to a health risk assessment for LTSS when appropriate, only voluntary family provision of services, adherence to prompt service authorizations, adverse determination appeals, and personal expenditures for certain uncovered managed care services. The National Center also offers case consultation assistance to attorneys and professionals regarding these matters through their website.
Upcoming Webinar on Medicare Home Health Benefit
The Center for Medicare Advocacy invites attendance at a free January 23 webinar focusing on current aspects of the Medicare home health benefit. Center attorneys, along with an experienced physical therapist, will discuss a case study offering insights into the provision of Medicare-covered care. Further information is available at the Center’s website .
Hush: Making Hospitals Quieter
Three cheers for quieter hospitals. “If part of the hospital stay is to recover from a procedure or illness,” asks New York Times op-ed writer Austin Frakt, “why is it so hard to get any rest? There is more noise and light than is conducive for sleep. And nurses and others visit frequently to give medications, take vitals, draw blood or perform tests and checkups—in many cases waking patients to do so. It’s more than annoying—such disruptions can harm patients. Short sleep durations are associated with reduced immune function, delirium, hypertension and mood disorders. Hospital conditions, including sleep disruptions, may contribute to ‘post hospital syndrome’—the period of vulnerability to a host of health problems after hospitalization that are not related to the reason for hospitalization. Small changes in hospital routines,” Frank writes, “can go a long way. Yale New Haven Hospital, for example, has empowered nurses to change medication schedules to minimize sleep disruptions and to tick off other tasks before patients go to bed. Massachusetts General Hospital in Boston has gone so far as to install rubber floors in some areas. ‘Since the 1960s, the noise level in hospitals has gone up,’ said Mojtaba Navvab, associate professor of architecture at the University of Michigan and an expert in reducing noise level in buildings. He helped design acoustical changes in the university’s hospital corridors. By adding acoustic tiles to hallway walls, ‘the sound level was three times lower.’
Aging Alone Without Close Social Connections
Adding immensely to the travails of aging is a trend documented in a Wall Street Journal article : The Loneliest Generation: Americans, More Than Ever, Are Aging Alone. Authors Janet Adamy and Paul Overberg portray the difficult older years of a number of individuals bereft of the companionship of a spouse, child, relative or other connected person. “Baby boomers,” they write, “are aging alone more than any generation in U.S. history, and the resulting loneliness is a looming public health threat. About one in eleven Americans age 50 and older lack a spouse, partner or living child. That amounts to about 8 million people in the U.S. without close kin, and their share of the population is projected to grow. In a review of 148 independent studies on loneliness, covering more than 300,000 participants, Julianne Holt-Lunstad of Brigham Young University and colleagues found greater social connections were associated with a 50% lower risk of early death. Research suggests that those who are isolated are at an increased risk of depression, cognitive decline and dementia, and that social relationships influence their blood pressure and immune functioning, as well as whether people take their medications.”
Learning to Be a Companion at the End of Life
End-of-life caregiving and grief counseling were on the minds of a number of writers in the closing weeks of 2018. “In the same way,” observed the Washington Post Debra Bruno, “that the birth process went from a doctor-run event to a movement in which women took charge of their own pregnancies and deliveries, there is growing interest in thinking about the dying process. In part, that’s because the large population bulge of boomers is reaching a point where the end seems not that far away. But, also, many people have had the experience of sitting at the bedside of the dying person without the slightest clue what to do. That realization not only came to Sister Rose Mary Dougherty, a member of the religious order School Sisters of Notre Dane in Baltimore, Maryland; she also resolved to do something about. In 2008, Dougherty created a nine-month Companioning the Dying training program. Today, it provides instruction for hospice workers, caregivers, volunteers and family members on how to be with someone in their final months or days. ‘We’ve lost the place of dying,’ says Jan Booth, a hospice nurse who helps out with the program. ‘How do we bring aging and illness and dying to some kind of context that doesn’t change the grief that’s inherent, but changes our capacity to be with it?’ Dougherty started with a few basic principles. One was to help caretakers learn to become better listeners. ‘It’s sitting with a loving alertness,’ she says. Companioning the Dying has something of the feel of group therapy—with readings, exercises and discussions—in which participants can talk freely and without judgment about anything they might have experienced with the dying. ‘Every death and every person is different,’ says Peter Fitz, a retired English professor. ‘The crucial part is to find out with the individual, not only on any given day or particular hour or minute, where they are. The task is emptying out your suggestions for people and learning to listen in a different way.’”
Caregiving and the Risk for PTSD
“I was my dad’s caregiver through his fatal illness. I had no idea I’d be at risk for PTSD.” So writes Jennifer N. Levin as she recounts her experiences assuming the role of caregiver after her father was diagnosed with a rare degenerative brain disease. “For two years,” Levin writes, “I made frequent trips home, staying for days or months at the time. I cut my father’s food so he wouldn’t choke, related my observations when his voice weekend, researched whatever clinical trials or various therapy regimens might stave off his disease. Because I was so focused on my dad’s health, I didn’t realize at the time how traumatic hospital visits were, or that their memories would haunt me. After he passed, classic PTSD symptoms, which included intrusive flashbacks, being ‘dazed’ when distressed, and avoiding medical settings reminiscent of his disease, recurred for a couple of years. ‘We’re increasingly thinking of caregiving as a public health issue,’ said Ranak Trivedi, an assistant professor in the psychiatry department at Stanford University who specializes in caregiver stress. She explained that caregiving is a risk factor for post-traumatic stress for the basic reason that ‘for a lot of people, this is a sudden and traumatic change in their life.’ If you had told me,” says Levin, “when my father got ill that I would be at risk of developing PTSD symptoms if I cared for him, my response probably would have been, I’ll be fine. Personal well-being isn’t something caregivers think about much, perhaps because many don’t have a choice about taking on this responsibility. I brushed aside any distress—such as panicking when my phone rang with an unknown number—as typical because, why wouldn’t this be upsetting? Caregivers often normalize negative responses, not realizing something deeper is a play. Making matters worse, they often delay their own mental health treatment to prioritize others’ care.”
A Mother’s Love Through Dementia
Cynthia Miller-Idriss pens a poignant remembrance of her mother’s loss of memories as she succumbed to dementia. “At 75 years of age, she no longer remembers her married name, or how to drive, tell time and use a fork. Of course there are some things it is good to forget. My mother forgot how she was passed over for promotion after promotion at work, as her male teacher colleagues moved ahead of her into administration. She doesn’t remember it was another school district that gave her a shot, promoting her all the way to superintendent. She doesn’t know that only happened after she had accumulated three Ivy League diplomas. For a long time, I thought the hardest part would be when she forgot me. But it turns out that when you are loved so much for so long, the love is left behind, layered into your bones. Love doesn’t reside only in the lover, I’ve learned. It settles in the beloved, permanent and alive. I know this, because even though she has forgotten—even though I am forgotten—all I have to do to feel her love is to think about it. And that, it turns out, is worth remembering.”
On Grief: ‘Bring Me More Pretzels—the Good Kind’
Also found among the end-of-year musings on loss and grief are the reflections of a comedian. “Tell me one more time what to do about grief,” Jo Firestone asked in the New York Times. “This past January I lost my closest friend to cancer. She knew how a pair of pants would fit me before I even tried them on. I have memorized where our arms would go when we hugged. The complexities of grief continue to bewilder me, but what I do know with certainty is that I am here and she is not, and now the new year will begin without her. I tell someone who says ‘let me know if there’s anything I can do’ that there is something you can do. You can bring me more pretzels—the good kind or really any kind but the ones you bought last time. If you also grieve, I am sorry. Buy foods that are easy to prepare, and make it your only goal to eat them before they go bad. Save your darkest thoughts for a journal, and never reread that journal. Label it in such a way that no one will ever be tempted to read it. My grandma, who at 89 is very sharp, sent me an email the other day containing a quotation from The Summer Day, a poem by Mary Oliver: ‘Tell me what is it you plan to do with your one wild and precious life?’ The new year begins, and somehow we keep moving. For those of us still here, what will we do?”
The Importance of Accepting Care
Looking at caregiving from another perspective, that of a recipient, Washington Post columnist Michelle Singletary recounts her recent experience after tripping down some stairs in her home and breaking her right ankle in two places. “For a few weeks, I couldn’t put any weight on my foot. Walking on crutches was so painful that I had to use a wheelchair. I wasn’t at all prepared for how vulnerable I would feel because I had to rely so heavily on others. My recent fall highlighted an issue I needed to address. Yes, I might lose some independence in a caregiving situation but accepting assistance can avoid more problems later. My stubbornness could cost more in caregiving expenses if a fall results in hospitalization or stay in a nursing home or assisted living facility. Then my therapist said something that I hadn’t considered: It’s not just about me. Pointing out my giving nature, she asked why I would deny my husband and children that same joy of serving. The long-term care crisis isn’t just about the cost. It’s also the emotional strain being put on many caregivers. Don’t make their job harder by refusing to see your physical limitations. It’s okay to ask for help.”
Middle Class Health Debt
As suggested above, while the long arc of American healthcare may bend towards ever-increasing coverage, the existing system’s holes and shortcomings confront Americans in many strata with daunting challenges. Take the Cano family of San Tan Valley, Arizona, as profiled by Kaiser Health News’ JoNel Aleccia. “Robert and Tiffany Cano have a new marriage, new house and a 10-month-old son, Brody. They also have a stack of medical bills that threaten to undermine it all. The pair, who earn nearly $100,000 a year, are insured and have had no major illnesses or injuries. Still, the Canos are among the 1 in 4 Americans who report in multiple polls that the high cost of healthcare is the biggest concern facing their families. And they are at risk of joining the 62% of people who file for bankruptcy tied to medical bills. The family is part of a struggling group of middle-class folks who have followed the rules and paid for employer-based medical insurance, only to find that soaring healthcare costs combined with high deductibles, high copayments and surprise medical bills leave them vulnerable. ‘It’s been, like, $300 here, $700 there,’ said Tiffany. ‘We had a hospital bill for Brody being sick of, like, $1,800.’ As for their own health care needs, Tiffany has used a prosthetic limb since childhood when her lower left leg was amputated because of a birth defect. She needs a new prosthesis because her body changed during pregnancy but she can’t see how to afford it. Mostly to pay off their healthcare debt, Robert has taken several part-time gigs this year—he works as a substitute teacher and a nighttime security guard, and delivers sandwiches for a fast food chain in Scottsdale. He said he sometimes works up to 120 hours a week. ‘I’m a fighter,’ he says. ‘I will not give up. ... If I can bring in an extra $400 a week or $800 a month, Tiffany can get what she needs for the baby.’”
Emigrating to Secure Healthcare Coverage
For one American facing the cost of cancer treatment the answer was compelling, albeit somewhat radical: emigration—first to England and then to France. “I am an accidental European,” writes Erica Rex in the New York Times. “I developed breast cancer in 2009. With no continuing medical coverage in the United States, and in desperate need of it, I moved to Britain. Under the sponsorship of an acquaintance, I was granted the right to remain and receive care through the National Health Service. When I moved to France four years ago, the French system quickly took over covering me. It has taken me nine years to grow accustomed to the idea that my healthcare won’t suddenly evaporate at the whim of the new government. Doctors here often ask how I landed in Europe. When I tell them, they shake their heads. France for me was not a vacation selection. Moving to Europe was a choice I weighed against other, grimmer options for healthcare. I’d rather have been able to get coverage without emigrating.” For Rex as she sits in a no-frill doctor’s waiting room in Tours, what strikes her is the intimate medical chat that ensues among her waiting room companions. “In France, medical privacy is irrelevant. No one will lose her job because of a lengthy convalescence. There is no possibility that pre-existing conditions will make insurance unaffordable. Unemployed people still receive treatment. Huge medical bills do not reduce ordinary citizens to a state of existential terror. The absence of unease over healthcare alters the texture of French experience. We get cozy in waiting rooms. Too many Americans do not realize how much better off they would be if they felt safer about access to medical care. Imagine what would happen if everyone felt safe—safe enough to talk about ailments in waiting rooms.”  
Follow Family Caregiver Alliance / National Center on Caregiving @CaregiverAlly
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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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