Vol. 18, No. 1
January 25, 2018

In This Issue: RAISE Family Caregivers Act the law of the land, state caregiver assistance, bundled payments, Medicaid work requirements, SNF quality concerns, provider performance penalties, Pfizer bows out on Alzheimer’s, transitional care and ERs, SNF patient assessments of preventable hospital readmissions, dementia care, long-term care insurance sticker shock, the ongoing HRRP debate, technology and decentralized care, patient-doctor communication and empathy, advance directives for dementia sufferers, and how to help and not help grieving mourners.
Will they or won’t they? Will the Republican House and Senate take a stab at entitlements in 2018? That was a major question as the New Year began; the signals, though somewhat mixed, appeared to predict that any major efforts to restructure Medicare, Medicaid, and Social Security would not be pursued during the current Congress. But if the mega safety net battle does stay off limits, 2018 has nonetheless brought forth a slew of other developments with major implications for families, patients, caregivers, and healthcare and health policy professionals.
RAISE Family Caregivers Act Signed
On the plus side, albeit of limited initial significance, Congress passed the RAISE Act prior to its year end adjournment. The RAISE Act , quickly signed by Pres. Trump, should serve to elevate to new visibility the need for actions that employers, government, healthcare providers and others can take to augment the medical, household and financial care from relatives and partners. Action may include caregiver training, respite options, caregiver-friendly workplace policies, innovative caregiving models and addressing disparities around the unique needs of diverse caregivers. Contributing to this heightened visibility will be a new national Family Caregiver Advisory Council consisting of key governmental, public and private players involved in caregiving issues.

***Read FCA Executive Director Kathleen Kelly’s statement on the RAISE Act in the Family Caregiver Alliance Announcements section below.***
State Actions to Address Financial Burden of Caregiving
Meanwhile, according to AARP, a number of states are not waiting for federal action. AARP points to moves in Hawaii, Washington, Arizona, Massachusetts, New Jersey, New York, and Wisconsin that address the staggering financial burden of caregiving. Hawaii became the pacesetter when it recently implemented the Kupuna (in Hawaiian, an elder, grandparent, or an older person held in high esteem) Caregivers Assistance Act. “The groundbreaking measure,” AARP reports, “provides up to $70 a day worth of services for a caregiver who assists a loved one over age 60 and is employed at another job for at least 30 hours a week. The money goes directly to providers of services, such as respite care, adult day care, home delivered meals, homemaker services, personal assistance, or transportation.”
New CMS Voluntary Bundled Payments Model
Less than two months after abandoning the Obama era’s mandatory bundled payment projects, CMS has launched a voluntary program, the Bundled Payments for Care Improvement Advanced Model, set to begin in October and run through 2023. As described by Becker Hospital Review’s Ayla Ellison, “the initiative includes 32 clinical episodes, with 29 in the inpatient setting and three in the outpatient setting. The clinical episodes may change in the future, as CMS may elect to revise them on an annual basis beginning January 1, 2020. Under the program, provider payments will be based on quality performance during a 90-day episode of care. A clinical episode will begin at the start of an inpatient admission to an acute care hospital, which CMS refers to as the ‘anchor stay’ or at the beginning of an outpatient procedure, i.e., the ‘anchor procedure.’ The clinical episode will end 90 days after the end of the anchor stay or the anchor procedure.”
Medicaid Waiver Policy: Work Requirements
The elephant in the health services room—Medicaid waiver policy—attracted further administrative attention as soon as the new year began when CMS issued guidance on Medicaid waiver requests and granted Kentucky a first-ever approval of its proposal to impose a work requirement on some Medicaid recipients. As described in Kentucky’s now approved proposal documents, the state program will require monthly documentation of 80 hours of work activities per month as a condition of eligibility for most adults ages 19 to 64. Former foster care youth, pregnant women, one primary caregiver of a dependent minor child or adult who is disabled per household, people who are medically frail, and those with an acute medical condition validated by a medical professional that will prevent them from complying, and full-time students are exempt from the work requirement. People with disabilities under the ADA also are exempt from the work requirement if unable to participate due to disability-related reasons. Qualifying work activities will notably include caring for a non-dependent relative or other person with a disabling chronic condition. The Kentucky go ahead and expected approvals for other states’ similar requests are certain to generate ongoing, passionate debates and possible legal action by advocacy groups perceiving the moves as contrary to Medicaid’s purpose and statutory provisions. Taking a broader look , Kaiser Family Foundation’s Robin Rudowitz posed several Medicaid “what to watch in 2018" questions: “What other pending waivers with work requirements will CMS improve? Will such approvals include work requirements for expansion and non-expansion (traditional) populations? How will these requirements be enforced? Will CMS approve other provisions that restrict eligibility such as time limits, drug testing, lockouts, as well as premiums and cost-sharing? With added complexity, how will these new waivers affect enrollment, program costs and administrative burden and cost?”
Washington State Waiver to Assist Medicaid Recipients With Employment and Housing
Amid the Kentucky waiver furor, the Center on Budget and Policy Priorities took note of a different waiver it deemed a real incentive to promote work by Medicaid recipients: Washington state’s plan to help beneficiaries with significant physical or behavioral health conditions gain access to housing and employment. “The waiver,” CBPP observed, “will provide housing stability services to improve physical and behavioral health outcomes for people experiencing homelessness or living unnecessarily in institutional care. People who have long histories of institutionalization or homelessness often need special supports—such as help finding safe, accessible, affordable housing, finding community social services, understanding tenant rights and responsibilities; and addressing housing emergencies with landlords and property managers—to successfully manage their health and the responsibilities of living on their own. The waiver will also support employment services to help more people with physical disabilities, mental health conditions, and substance abuse disorders find a job that matches their skills and accommodates health conditions.”
Nursing Homes: Patients at Risk
The quality of care in nursing homes remains high on the agenda of advocacy groups distressed by ongoing reports of serious lapses and reduced regulatory oversight. Kaiser Family Foundation’s Jordan Rau reported that “Basic steps to prevent infections—such as washing hands, isolating contagious patients, and keeping ill nurses and aides from coming to work—are routinely ignored in the nation’s nursing homes, endangering residents and spreading hazardous germs. Kaiser Health News’ analysis of four years of federal inspection records show 74% of nursing homes have been cited for lapses in infection control—more than any other type of health violation. In California, health inspectors have cited all but 133 of the states 1251 homes. Although repeat citations are common, disciplinary action such as fines is rare. Nationwide, only one of 75 homes found deficient in those four years has received a high-level citation that can result in a financial penalty. ‘Facilities are getting the message that they don’t have to do anything,’ Rau quotes Michael Connors of California Advocates for Nursing Home Reform. ‘They’re giving them low-level warnings year after year after year and the facilities have learned to ignore them.’”

At the same time, Rau went on to report in a separate article, Obama era guidelines regarding the use of fines against nursing homes that harm residents have been significantly scaled back in recent months. “The shift in the Medicare programs penalty protocols was requested by the nursing home industry. The American Health Care Association, the industry’s main trade group, complained that under Obama inspectors focused excessively on catching wrongdoing rather than helping nursing homes improve. But advocates for nursing home residents, like Toby Edelman at the Center for Medicare Advocacy, say the revised penalties are weakening a valuable patient safety tool. ‘They have pretty much emasculated enforcement, which was already weak.’”
Analysis of Hospital Financial Penalty Provisions
Obamacare’s financial penalty provisions for hospitals with high rates of patient care deficiencies have hit 751 hospitals, according to CMS’s most recent announcement. Analyzing the department’s data, Kaiser Health News’ Jordan Rau reported that “the penalties again fell heavily on teaching hospitals although less than before. A third of them were punished this year, whereas last year the penalty was levied on nearly half of the nation’s teaching hospitals. ‘Academic medical centers serve patients with more complex conditions who are at greater risk of hospital-acquired infections compared to community healthcare providers,’ Stanford Healthcare said in a written statement. Hospitals that treat large proportions of low income people also were fined more than hospitals with a more affluent patient base. About a third of the safety net hospitals were penalized, roughly the same as last year. The penalties,” Rau points out, “ have been controversial from the beginning. The hospital industry faults them as unfairly punishing hospitals that treat sicker patients and those that do a better job of identifying infections and other patient complications. Patient advocates say that while not perfect, the penalties have been a valuable prod to make hospital executives consider more than the bottom line.”
VA Hospital Cares for Fewer Patients for Better Quality-of-Care Rating
One possible example of the law of unintended consequences, this one involving the use of hospital performance measures, appears in The New York Times’ account by Dave Philipps who writes of a Roseburg, Oregon VA hospital’s “apparent attempt to limit the number of patients admitted to the hospital in an effort to lift its quality-of-care ratings. Fewer patients meant fewer chances of bad outcomes and better scores for a ranking system that grades all veterans hospitals on a scale of 1 to 5 stars. In 2016, administrators began cherry picking cases against the advice of doctors—turning away complicated patients and admitting only the lowest risk ones in order to improve metrics, according to multiple interviews with doctors and nurses at the hospital and review of documents. ‘It’s a numbers game,’ Phillips quotes hospitalist Dr. Stephen Bloom. ‘The leadership has figured out the hospital can actually do better by seeing less patients. These numbers show up on the director’s report card, so it is very important they look good.’”
Pfizer Stops Alzheimer’s and Parkinson’s R&D
Pharmacy giant Pfizer began the year with a discouraging announcement: a decision to abandon further research and development activities related to Alzheimer’s and Parkinson’s diseases. “Like several peers,” the Wall Street Journal’s Jonathan D. Rokoff reported , “Pfizer has invested heavily in developing treatments for Alzheimer’s and Parkinson’s because of the huge need. About 5.5 million Americans have Alzheimer’s, and the numbers are expected to rise as the population ages. Analysts say successful treatments for the memory-robbing disease could have multibillion-dollar sales potential. Unfortunately, however, promising compounds have repeatedly failed to work during testing.” Disappointment at the announcement was widely voiced. “With no drug for dementia in the last 15 years, this will come as a heavy blow to the estimated 46.8 million people currently living with the condition across the globe,” the head of research at Britain’s Alzheimer’s Society, James Pickett, was quoted by Science Alert’s Peter Cockrill. “Every three seconds someone in the world develops dementia, and with this number set to rise, there’s never been a more important time for such life-saving research.”
Sutter Health’s Promising ‘Advanced Illness Management’ Program
Commonwealth Fund writers offer a case study of a program designed to help patients with terminal conditions and prognoses navigate their physical and emotional challenges as their health deteriorates. “Advanced Illness Management” (AIM) is the approach being implemented at Sutter Health, a large nonprofit delivery system in California. AIM staff coordinate often complex treatment regimens and educate patients and families on recognizing signs of decline and asking for help to avoid complications. The program also places a heavy emphasis on advance care planning to ensure patients’ goals and treatment preferences are elicited as their conditions evolve, which may mean more or less intensive care at the end of life. According to Sutter, patients in the AIM program spend fewer days in the hospital in the last three months of life relative to the most recently available national benchmark and make less use of intensive care units. They are also less likely to die in the hospital. While transfers to hospice and deaths in hospice are on par with national averages, AIM patients are admitted to hospice earlier. Patients give the program high marks, with more than 80% responding positively to survey questions about care coordination and communication, symptom management, and knowing their rights and responsibilities.
Addressing the Challenges of Emergency Room Visits for Older Adults
The potential adverse effects of a senior’s trip to the emergency room—with or without a related hospitalization—and efforts to ameliorate those effects feature in recent research reports. Kaiser Family Foundation’s Judith Graham sets the stage with some challenging data from a Yale University study indicating that “six months after visiting the ER, seniors were 14% more likely to have acquired a disability—an inability to independently bathe, dress, climb down a flight of stairs, shop, manage finances, or carry a package, for instance—than older adults of the same age, with a similar set of illnesses, who did not end up in the ER. These older adults weren’t admitted to the hospital from the ER, they returned home after the visits, as do about two thirds of seniors who go to ERs nationally.” Graham points to new accreditation requirements from the American College of Emergency Physicians that in February will incorporate “at least a minimal level of geriatric competence.” ERs will be required to provide walkers, canes, food and drink, and reading glasses to older patients. For intermediate and advanced accreditation, physicians will have to oversee improvement initiatives, such as limiting the use of urinary catheters in older patients. Also, changes in the ER environment such as nonslip floors and enhanced lighting will be required, along with amenities such as hearing devices, thicker mattresses and warm blankets. Family members can also help older adults during and after a visit to the ER. ‘My biggest piece of advice,’ said Dr. Kathleen Unroe associate professor of medicine at Indiana University School of Medicine, ‘is to get there and stand by their side throughout the experience, because things happen very quickly in emergency rooms, and these are difficult environments to navigate under the best of circumstances.’”

One promising approach to addressing the ER’s challenge to seniors emerges from a study of three hospitals’ implementation of a Geriatric Emergency Department Innovations program. Aimed at reducing the need to hospitalize, the program, according to Northwestern University’s description, “features geriatric care nurses who determined if emergency patients age 65 and older were experiencing mental or physical decline, if they were having trouble caring for themselves at home, and if they had medical complexities common in older adults. Providing transitional care to geriatric patients in the emergency department reduced the risk of unnecessary hospitalizations by 33%. Sometimes these patients will be moved out of a busy emergency department to a less active floor that had quieter rooms with doors, TVs, and natural lighting more comfortable to older patients. The patients received follow-up calls after being discharged and were offered appointments with social workers, if necessary. Patients visiting the emergency department who received specialized care were admitted to the hospital 36% of the time whereas patients who did not receive the specialized care were admitted 53% of the time. It is important to reduce hospitalization of older patients, the study authors emphasized, because hospital admissions increase the risk of delirium, infection, and falls.”
Hospital Readmissions Reduction Using Email System
The crucial importance of transitional planning and providing elderly patients and caregivers with more favorable post-hospital or post-ER outcomes continues to call for creative efforts to provide that planning. Critical care coordination based upon timely communication was boosted by way of an email system explored in a study from the San Francisco Health Network. The intervention studied flowed in part from ongoing communication failures generated by non-interoperable electronic health record (EHR) systems. “Security-based email was selected as the method of care coordination and follow-up scheduling,” researchers reported. “Care transition emails are sent by the inpatient team at admission and discharge through a secure server, and the recipients include inpatient team members and primary care team members. Using standardized care transitions communication beginning at admission, inpatient providers were able to collaborate with primary care teams to create post-discharge plans, including follow-up appointments, and provide patients with a specific follow-up plan prior to discharge. This inpatient and outpatient collaboration resulted in a statistically significant improvement in attendance rates at post-discharge follow-up, which has a considerable potential impact on readmissions. During the intervention, patients with an established primary care provider who attended follow-up within seven days of discharge had a 58% decreased rate of all-cause, thirty-day readmissions.”
Analysis of Patient and Family Perceptions of Hospital Readmissions from SNFs
From Vanderbilt University Medical Center comes a study analyzing patient perceptions of preventable hospital readmissions from skilled nursing facilities. Among the study authors’ detailed findings: “one method that has not traditionally been used to estimate readmissions preventability is to directly ask consumers—patients and/or their respective family members or caregivers who experienced both hospitalizations—to provide their perspective about factors that contributed to their readmission. Overall 53 of the 156 hospital readmissions from SNFs were perceived by consumers as preventable. Interviews revealed that patients and family members/caregivers perceive themselves to be the primary drivers of transfers in over one third of readmissions. Although consumers who endorsed preventability more frequently implicated aspects of SNF care, they described quality issues in both the SNF and the hospital. Inadequate treatment or responsiveness by SNF staff, improper medication management at the SNF, premature hospital discharge, and poor hospital discharge planning were the largest areas of concern expressed by consumers in this study. The study’s findings,” the authors conclude, “suggest that a substantial proportion of readmissions are due to factors more under the control of the discharging hospital than the receiving SNF. In particular, the perception that patients were discharged too quickly suggest that hospital providers may have had an unrealistic expectation of the capabilities of the staff to manage the patient’s clinical care or erroneously concluded that the patient was ready for discharge.”
Understanding Poor Healthcare Communication at the ‘Transition Nodes’
One other look at communication issues affecting transitional care comes from nurse Daniel van Leeuven, who focuses on what he terms “transition nodes. These nodes,” van Leeuven writes , “include clinician handoffs, communication from one clinician to another, transfers from one level of care to another, and care planning between clinicians and patients and their support networks. Healthcare communication across transition nodes happens billions of times a day with great cumulative impact on lives, communities, well-being, and resources. Poor communication at transitions is at the root of much overuse, underuse, and misuse of health resources, and results in the inability of patients to complete recommended treatment. The only consistency across transition nodes is the patient and their family and personal care partners, yet the industry is only beginning to include them in communication planning, workflow, learning, and technology.”
Dementia Caregiving: Research, Challenges, Support, and Improvement
Blogging on the Health Affairs website, four writers explore the current landscape affecting the estimated 15 million family caregivers in the U.S. who provide unpaid care for a loved one with dementia. The writers review the most challenging dementia behaviors, preferred sources of information and formats of helpful information, and implications for healthcare providers’ contributions to caregiver relief. “The most challenging behaviors caregivers of loved ones with dementia list include agitation or aggression, repetitive speech or actions, and wandering. These responses indicate the need for providers to both train caregivers in how to interpret and manage these behaviors and how to recognize their underlying causes. Providers should modify care in a way that satisfies the patient’s needs and mitigates the challenging behaviors. Person-centered, comfort-focused models with dementia care—such as the Comfort Matters approach, which focuses on interpreting behaviors of patients with dementia as communication and creating personal care plans—offer frameworks for how providers such as nurses, doctors, certified nursing assistants, social workers, spiritual care providers, and therapists can address behavioral challenges.”
NASEM Workshop in February on Physician-Assisted Death
The National Academies of Science Engineering and Medicine (NASEM) has announced it will be holding a two-day workshop February 12-13 to explore the “landscape and potential approaches” regarding physician-assisted death. The workshop, NASEM stated, “will serve as a neutral space to facilitate dialogue and explore what is currently known about physician-assisted death—and clarify gaps in research and data collection in order to help inform potential new approaches to addressing challenges faced in the provision of care. The workshop will not focus at length on the moral or ethical arguments for or against the practice of physician-assisted death.” Registration for the workshop, which is open to the public in person or by webcast, is available at NASEM’s website .
KFF Web-based Tool for Comparative Information on Medicare Reform
The Kaiser Family Foundation has developed a web-based tool to enable advocates and other interested individuals to access explanatory and comparative information regarding the various CMS-proposed models and demonstrations testing ways of paying providers to deliver health care to people with Medicare. “Medicare Delivery System Reform: The Evidence Link” contains material to understand the models’ costs and potential or realized savings, as well as participating populations, from beneficiaries to care providers.
Potential Impact of Medicaid Work Requirements for a Kentucky Family
The Medicaid work requirement announcement sparked extensive media coverage but one article that particularly stood out was Washington Post reporter Amy Goldstein’s effort to convey the real world implications of the administration’s decision. Traveling to Kentucky, Goldstein interviewed residents who expect to be most affected by the requirements. “Caught in limbo,” Goldstein reports, “are people such as Teresa Loman, who lives in working-class Erlanger in Northern Kentucky and juggles two part-time bartending jobs while raising Leona, 6½ and Vivian 4. Loman is good at her work—friendly with customers and a three time winner of the Guinness perfect pour competition at Molly Malone’s Irish pub in nearby Covington. Loman has Medicaid and worries that, if she is not exempted, she could be cut off when Vivian is a little older because her bartending hours do not add up to 80 every month. Loman knows the importance of Medicaid. It paid thousands of dollars in hospital bills a couple of years ago after a pain in her side turned out to be an inflamed appendix that was about to burst. Working opposite shifts to provide daycare expenses, she and her partner Steve Hunter don’t see each other much, Leona and Vivian do not see them together, and she has little time for healthy cooking. Loman does not think the new rules should force her to choose between her insurance and being a good mother. ‘I want to be there,’ she said, ‘to teach the girls to read and sled and make homemade playdough.’”
Do Medicaid Work Requirements Make People Healthier?
The New York Times’ Margot Sanger-Katz set out to determine whether requiring people to work can make them healthier. “It is not at all clear how much worker income alone improves health. In fact there is quite a lot of evidence that causality can go in the opposite direction, since health problems can make it difficult to work or go to school. It might be, as the CMS work requirement guidance document suggests, that people who don’t work become depressed. Or it could be some people who are depressed have a harder time getting or keeping a job. Treating depression might ease their symptoms and improve their employment prospects. Studies of the Medicaid population suggest most of them work already. ‘The work requirement itself doesn’t necessarily lead to employment, and especially not into work that will lead them out of poverty,’ argues Urban Institute senior fellow Heather Hahn. And Robert Rector, a senior research fellow at the Heritage Foundation, who helped write the welfare reform work requirements and remains a strong advocate for them in many more social welfare programs, says he does not think they are a good match for a health insurance program. ‘I’m not surprised that work requirements failed to push people into middle-class jobs. It’s an irrational expectation and it’s not an expectation I have.’”
Green House Homes: A Nursing Home Alternative
Amid the stories of nursing home quality lapses and lax oversight, The New York Times New Old Age columnist Paula Span reports on “A Better Kind of Nursing Home”—Green House Homes at Green Hill, a continuing care community in Orange, New Jersey. “One thing that struck me most,” Span writes, “was a man sitting alone at the communal table, having his breakfast oatmeal—at noon. The staff knows that he doesn’t like getting up or eating early in the day. At conventional nursing homes, aides have to hustle residents out of bed, help them dress, escort them into the dining room by whatever time breakfast is served, and then perhaps whisk them off to physical therapy. These facilities struggle to provide even a smidgen of personal autonomy. Here, physical therapists come to the Green House Homes. If they find the residents asleep they come back later.“While recent research,” Span points out, “does find some shortcomings in the Green Hill model, the overall results are positive, particularly in terms of its ‘consistent assignment’ of aides for residents, it’s higher performance on federal inspections criteria, and its Medicare cost savings.”
Long-term Care Insurance: Double Trouble
Long-term care presents not only quality challenges but sticker shock pricing as well. And, as the Wall Street Journal’s Leslie Scism reports , the efforts by individuals to prepare for retirement health costs by buying long-term care insurance policies are foundering on the shoals of huge premium increases. Scism provides a detailed historical review of the long-term care insurance industry, the flawed actuarial analyses underlying many of the policies that have been sold, and purchaser and state regulatory agency attempts to cope with the premium escalation. “The industry is in financial turmoil causing misery for many of the 7.3 million people who own a long-term care policy, equal to about a fifth of the US population at least 65 years old. Steep rate increases that many policyholders never saw coming are confronting them with an awful choice: Come up with money to pay more or—walk away from the coverage. ‘Never in our wildest imagination,’ Maine retiree Sally Wylie told Scism, ‘did we consider that the company would double the premium.’”
Debate and Future of the Hospital Readmission Reduction Program (HRRP)
Two recent articles focus on the emerging debate over the desirability of the Hospital Readmission Reduction Program (HRRP). STAT’s Casey Ross delves deeply into the varying interpretations of studies looking at HRRP’s impact on Medicare death rates. While there is general agreement that the program has succeeded in reducing 30-day readmissions, prominent researchers, Ross reports, are arguing over whether “hospitals are taking shortcuts, and in some cases compromising patient care, to avoid financial pain and public embarrassment.”

How to proceed in the face of the conflicting study analyses has prompted a JAMA Forum response from Harvard’s Dr. Ashish K. Iha. “Is it possible,” Iha asks, “that HRRP led to increasing mortality rates? It is. We know that with the program’s implementation, hospitals’ incentives for reducing readmissions were between six and 10 times greater than the incentives for reducing mortality. Given the signal by the national ‘pay-for-performance’ programs, it isn’t surprising that hospitals shifted their attention from mortality to readmissions. Mortality, which had been decreasing for nearly a decade, seems to have plateaued or even increased after HRRP was implemented, while readmissions have fallen. Of course it is possible that there is no relationship between HRRP implementation and the changes in mortality rates. But the evidence that HRRP caused a decrease in readmissions is of comparable quality to the evidence that HRRP caused an increase in mortality. It is hard to accept one without accepting the other.” What to do? Iha offers several suggestions, including reweighting the incentive programs in favor of mortality concerns, developing acceptable “bundled payment” systems that reward quality through an extended spectrum of care, and perhaps most unexpectedly, letting patients determine the incentives hospitals receive, thereby reducing the threat of gaming and getting hospitals to focus on what matters to patients.”
Technology and Healthcare Delivery
Several articles at year’s end struck a futuristic note by exploring how rapid advances in technology may impact healthcare delivery. In “How Big Tech is Going After Your Healthcare” The New York Times’ Natasha Singer quotes second year medical student Daniel Poston: “It’s not inconceivable, by the time I graduate from medical school, that the entire practice of medicine can be revolutionized by technology.” “Apple, Google, Microsoft, and other tech giants,” Singer writes, “have transformed the way billions of us communicate, shop, socialize, and work. Now as consumers, medical centers, and insurers increasingly embrace health tracking apps, tech companies want a bigger share of the more than $3 trillion spent annually on healthcare in the United States. Physicians and researchers caution that it is too soon to tell whether novel continuous-monitoring tools, like apps for watches and smart phones, will help reduce disease and prolong lives—or just send more people to doctors for unnecessary tests. ‘There is no shortage of hype,’ said Dr. Eric Topol, director of the Scripts Translational Science Institute in San Diego. ‘We’re In the early stages of writing these tools. Who do they help? Who do they not help? Who do they provide just angst, anxiety, and false positives?’”

For their part New England Journal of Medicine contributors Sean Duffy and Dr. Thomas H. Lee are quite sanguine about the potential for a system focused on high quality non-inperson, non-visit care. “Virtually all physicians already use non-visit interactions to some extent, but their improvised approaches could be vastly improved if health systems were designed with such care as the explicit goal. Progress in this direction is already underway. At Kaiser Permanente, for example, 52% of 100 million patient encounters each year are now virtual visits. The organization has been able to innovate in this area in part because it spends about 25% of its annual $3.8 billion capital budget on information technology. Nevertheless, these virtual visits only scratch the surface of what’s possible with today’s technology. We believe,” the authors conclude, “that the clinicians and systems that lean in toward this change rather than resist it find that it deepens their partnerships with patients. Patients who find their needs addressed simply, quickly, and efficiently will know that if the system requires an inpatient visit, it’s doing so because of clinical necessity.”
Healthcare Outside the Hospital or Clinic: Don’t Forget the Unpaid Family Caregivers
Decentralized healthcare delivery should be actively pursued according to writers from the University of Colorado School of Health and Tufts University Medical School. “The traditional delivery model of a hospital as the ‘hub’ of care, with a single centralized facility providing every facet of disease management and treatment, specialized surgical cancer care to routine eye exams and chronic blood pressure management, should be questioned. Today, remote monitoring, wearables, faster wireless communication devices, robust EHR platforms, virtual health visit capabilities, and eventually, prescriptive intelligence, are making it less necessary for patients and physicians to always interact within the four walls of a hospital or clinic. Whereas such technology previously was reserved for the purpose of providing care in the most remote areas, an entire industry is increasingly leveraging the power of mobile health to connect patients with providers.” The author’s enthusiasm notwithstanding, one cautionary note came in response to their article from the United Hospital Fund’s longtime caregiver advocate Carol Levine: “And who will do the daily work of caring for a person ill enough to be hospitalized?” Levine asks. “A visit by a doctor or nurse or therapist will not feed the patient, change the bedding, monitor the medications, or do any of the important daily tasks that the patient cannot do alone. This model shifts many costs of care to unpaid family members who are typically not trained or supported; they are expected to give up their other responsibilities—jobs, families, life—to do the right thing. While most people want to be at home rather than a hospital, and there are certainly advantages, and most family members will do their best to provide good care, the cost to the invisible workplace should not be overlooked.”
Doctor’s Experience Informs Work to Improve Provider Empathy and Communication
“The searing abdominal pain came on suddenly,” Kaiser Health News’ Michelle Andrews writes , “while Dr. Rana Awdish was having dinner with a friend. Soon she was lying in the back seat of the car racing to Henry Ford Hospital in Detroit, where she was completing a fellowship in critical care. On that night nearly a decade ago, a benign tumor in her liver burst causing a cascade of medical catastrophes that nearly killed her. Awdish was seven months pregnant at the time; the baby did not survive. She had a stroke and, over the days and weeks to come, suffered multiple organ failures. She required several surgeries and months of rehabilitation to learn to walk and speak again. Helpless, lying on a gurney in the hospital’s labor and delivery area that first night, she willed the medical staff to see her as a person rather than as an interesting case of what she termed ‘Abdominal Pain and Fetal Demise.’ But their medical training to remain clinically detached worked against her.” Surviving her terrible ordeal, Andrews reports, Awdish has recently published “ In Shock” describing her experience and offering recommendations for change, including implementation of a program called Clear Conversations that seeks to improve empathy and communication with patients. “At retreats that typically last two days, Henry Ford Hospital staff practice having difficult conversations with improvisational actors to act as their patients. The program also trains providers in fundamental patient communication skills and offers real-time physicians shadowing to provide feedback.”
New Dementia-Specific Advance Directive
Advance directives—the importance of them and their more-often-than not absence—have elicited much discussion and produced numerous drafting aids. The New York Times columnist Paula Span looks at one recent effort designed to produce a five-page document that its developer, University of Washington internist Dr. Barak Gaster, calls a dementia-specific advance directive. “In simple language, it maps out the effects of mild, moderate, and severe dementia, and asks patients to specify which medical interventions they would want—and not want—at each phase of the illness. ‘Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,’ Dr. Castor told me. ‘At what point, if ever, would they not want medical inventions to keep them alive longer? A lot of people have strong opinions about this, but it’s hard to figure out how to let them express them as the disease progresses. The standard advance directives tend to focus on things like a permanent, or a persistent vegetative state. Most of the time, they apply to a person with less than six months to live. Although it’s a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct own care isn’t predictable or obvious.’” Span does point out that some end-of-life planners question the advisability of Gaster’s form, citing a failure to involve family members, as well as the patient, in formulating the details and reasons for healthcare wishes. What is not in dispute? Span asks. “It’s crucial to talk to family, friends, and doctors about the quality of life we find acceptable and unacceptable, which interventions we agree to or don’t—and then to document those decisions and circulate the document to designated decision-makers and everyone else who might be involved. And yes, we should incorporate decisions about dementia into that process, a separate form or not.”
Two New Books Address Grieving
In the end, when everything that can and should be done —and has been done—and a loved one is gone, the time for grieving arrives. And that universal experience, reports The New York Times personal health columnist Jane Brody, has generated two new books by authors Megan Devine, a Portland Oregon psychotherapist, and Julia Samuel, who works with bereaved families in private practice and in England’s National Health Service. The books—“It’s OK that You’re not OK” by Devine and “Grief Works: Stories of Life, Death and Surviving” by Samuel—are replete with stories and guidance that can “help both those in mourning and the people they encounter avoid many of the common pitfalls and misunderstandings associated with grief. Both books attempt to correct false assumptions about how, and how long, grief might be experienced. The books share a most telling message, as Samuel put it: ‘there is no right or wrong in grief; we need to accept whatever form it takes, both in ourselves and in others.’ Recognizing loss as a universal experience,’ Devine observes, ‘we can start to understand the true nature of grief, we can have a more helpful, loving, supportive culture.’ As a bereaved mother told Samuel, ‘you never get over it, you get on with it, and you never move on, but you move forward.’ Devine agrees: ‘the pain cannot be fixed, companionship, not correction, is the best way to deal with grief.’ She encourages those who want to be helpful to bear witness, to offer friendship without probing questions or unsolicited advice, help if it is needed and wanted, and a listening ear no matter how often mourners wish to tell their story.”
Statement on the Passage of the RAISE Family Caregivers Act
As family caregiver advocates for 40 years, Family Caregiver Alliance recognizes the passage of the federal Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act as critical to the creation of a strategy to acknowledge and aid unpaid family caregivers on a national level.

We wish to thank Sen. Susan Collins (R-ME) and Sen. Tammy Baldwin (D-WI), and Rep. Gregg Harper (R-MS) and Rep. Kathy Castor (D-FL) for their bi-partisan efforts to pass the RAISE Act.

The RAISE Act is an important step toward more fully recognizing the impending crisis in caregiving as the aging population continues to grow. As improved guidelines and policies develop from the legislation, funding will be required to relieve the 2015 AARP estimate of $470 billion in unpaid care and the 2016 AARP estimate of $7,000 in out-of-pocket expenses provided annually by family caregivers.

Better federal coordination across agencies and initiatives can further the recognition and support of unpaid family caregivers and has the possibility of large scale change in payment and service delivery systems. Meanwhile, coordination and testing new service systems continue at the state and local levels—a living laboratory of new collaborative efforts between health and community based social services—that respond to the practical daily needs of caregiving families.

Kathleen Kelly, Executive Director
Winners of the 2017 Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards
In celebration of the 10th year of the Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards , Family Caregiver Alliance and The Rosalinde and Arthur Gilbert Foundation are pleased to announce three winning organizations—each with outstanding programs that address the needs of caregivers for people with Alzheimer’s disease.

The nationally-selected programs will each receive $20,000 in the following three categories:



ARTZ Philadelphia, Philadelphia, Pennsylvania, for ARTZ @ Jeff: An Arts and Dementia Mentoring Initiative

View detailed information on the winning programs.

Representatives of the winning organizations will receive their awards at a reception held during the Aging in America Conference in San Francisco, March 26 to 29. The reception will take place on Tuesday, March 27, 6 p.m. to 8 p.m. , at the Parc 55 Hotel. The reception is open to the public. Join us!
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Contributing to Caregiving Policy Digest are Alan K. Kaplan, attorney and health policy consultant, Kathleen Kelly, and Francesca Pera (editing and layout).

Send your feedback and/or questions to policy_digest@caregiver.org .

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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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