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“The root of (our many health care system) problems is that as the United States became a prosperous, industrialized society in the early twentieth century, it chose to treat health care as a commercial product rather than as a social good, such as education. As a result, whereas government-mandated universal schooling had become the norm by the 1920s, health care still remains primarily a private-sector activity driven by the profit motive. Slowly but steadily, however, public sentiment has shifted, resulting first in the advent of Medicare and Medicaid and later in the passage of the ACA. According to public opinion polls conducted by the Kaiser Family Foundation, between 2000 and 2019, the proportion of Americans with a favorable opinion of a single-payer, government-run health insurance system rose from 40 percent to 53 percent. The question, it seems, is no longer whether the United States will establish a single-payer system, or at the very least a hybrid system radically different from the one it has now. The question, instead, is how that change will take place and what kind of system it will produce.”

— William C. Hsiao, Harvard Professor of Economics Emeritus

Foreign Affairs, January 2020

The Dawn of 2020: Déjà Vu?

As 2019 dawned 12 months ago, Caregiving Policy Digest listed a number of major healthcare challenges whose fate would unfold in the ensuing year. Now, in bidding farewell to 2019 and welcoming 2020, a similarly formulated list looks remarkably familiar. Still awaiting attention: the constitutionality of Obamacare, the legality of Medicaid work requirements, the ever-increasing costs of prescription drugs, the incorporation of social determinants of health into healthcare delivery systems, ending surprise medical bills, assuring pre-existing condition coverage, breaking through the scourge of dementia and Alzheimer’s disease, improving conditions for residents in long-term care, maximizing the utility of technological advances in the daily lives of the aging, infirm, and their caregivers, and easing the enormous burdens of illness and caregiving Americans across all spectrums endure.

Our New Year’s crystal ball — this time offering a “20/20” metaphor opportunity — predicts, on a 1-10 scale of certain-to-occur, at least one looming 10: the holding of the November 2020 presidential election. At the same time, the failure of Congress to act on drug costs and surprise bills, coupled with both December’s Fifth Circuit’s non-resolution of the ACA constitutionality challenge and the still pending D.C. Circuit’s Medicaid work requirement ruling, promise to keep those matters very much alive in the coming months. They and so many other issues will all be overshadowed by the unfolding presidential impeachment proceedings and the 2020 election campaign.

In This Issue: Circuit court punts on ACA’s constitutionality :: Federal employees gain paid leave for child care :: Congress postpones action on drug costs and surprise medical bills :: House goes all-out on Medicare expansion :: Medicaid churning persists :: Advocates fight SNF and home health care PDPM therapy cuts :: More dying at home: a good thing? :: More cold water on the CMS Hospital Readmission Reduction Program :: Budgeting for social determinants of health :: Looming early diagnoses of Alzheimer’s pose dilemmas :: New approaches to depression and anxiety in Alzheimer’s patients :: Cognitive effects of blood pressure meds and statins :: Medical cannabis and the elderly :: The unavailability of life-saving antibiotics :: The fraud in medical billing :: Fraility and the risks of surgery, however minor :: The charm and threat of robotic assistants :: Palliative care in rural America :: Teeny Zimmerman gets her final wish :: Marlene Kennedy comforts husband Earl despite the challenges of a winter trek in cold, snowy Nebraska

Obamacare Decision Sent Back to Texas Judge

On December 18 the U.S. Fifth Circuit Court of Appeals, in a 2-1 decision, handed down its long-awaited ruling on whether Republican plaintiffs had achieved their long-sought goal of invalidating the entire Affordable Care Act on constitutional grounds. Not so fast, the sympathetic majority concluded; we would rather let the original Texas District Court judge take another look and tell us whether he really meant to take down the entire Obamacare edifice. The move wrote The New York Times Jan Hoffman means “the legal showdown could continue for a long time, almost certainly beyond the 2020 election. Added University of Michigan law professor Nicholas Bagley, “The court reasoned that parts of the ACA — including, for example, the part requiring chain restaurants to post calorie counts on their menus — don’t have much to do with the invalid individual mandate. They could perhaps be salvaged. So, the Fifth Circuit sent the case back to the judge and told him to try again. It’s hard to resist the conclusion that the delay is strategic: declaring all or part of the ACA invalid would probably have been bad for Republicans in the 2020 election. Many parts of the ACA are quite popular, especially the protections for people with preexisting conditions and the Medicaid expansion. Punting to the district court gives Republicans a little more breathing room. Unless, of course, the Supreme Court chooses to intervene at this stage. That said, the justices generally dislike hearing cases before they’re final. They may be especially disinclined given that the ACA will remain intact during the additional proceedings on severability.”

Gains in Paid Leave for Federal Workers

Federal civilian employees received two Christmas gifts from Congress and President Trump: a higher than hoped-for pay raise and up to 12 weeks of paid parental leave in connection with the birth, adoption, or foster care placement of a child covered by the Family and Medical Leave Act (FMLA). While literally and figuratively a baby step in terms of forging a national policy to support all family caregivers, the benefit addition does constitute positive movement. Still, more progress can be seen by corporations (and a few states) in the steps taken to provide employees with paid leave to care for ailing spouses, parents, and, even, pets. Various leave options in eight major enterprises — including Best Buy, Cisco, Bristol-Myers Squibb, and Reddit — are highlighted in a tour presented by the Washington Post’s Jena McGregor.

Prescription Drug Costs and Surprise Medical Bills: Still Waiting ...

As noted above, Congress closed out its lawmaking year without producing a law dealing with escalating prescription drug costs or surprise medical bills. But, as Modern Healthcare’s Rachel Cohrs reported , “All hope for lowering drug costs and addressing balance billing during this Congress is not yet lost. Lawmakers extended funding for several Medicaid and Medicare programs until May 22, which could set up another legislative vehicle. And lawmakers who worked on surprise billing legislation this session have committed to keep working on the issue in 2020. Senate Health Committee ranking Democrat Patty Murray of Washington state said she is hopeful lawmakers can move next year in a way that does not shift costs onto patients or interfere with state efforts. ‘I believe the bicameral agreement we’ve been working on meets these goals, and I’m very optimistic that we can get a final deal across the finish line next year that does as well,’ Murray said. Committee chairman Lamar Alexander pledged to work with Murray, and reiterated his commitment to addressing surprise billing legislation. ‘We need to get it done. It’s going to be my top priority.’ House Energy and Commerce ranking Republican Greg Walden of Oregon expressed regret that politics got in the way of passing a bipartisan, bicameral bill that had support from the White House and he committed to pushing the bill in 2020. All things considered, however, legislative prospects in the thick of campaign season are dim, and House and Senate leaders have shown no appetite to force their members to vote on an issue that divides powerful interests. As Families USA’s Shawn Gremminger observed, ‘There’s a promise that we’ll get you next time, but a May time frame is an abysmal time to make major bipartisan legislation.’”

House Medicare Expansion Bill

While a bicameral result regarding drug costs and balance bills failed to emerge in December, for its part, the House, with a solid Democratic majority, did succeed in passing a major Medicare expansion bill, H.R.3, The Elijah Cummings Lower Drug Costs Now Act, named for the recently deceased and greatly admired Representative. As summarized by the Center for Medicare Advocacy, “This bill, if enacted into law, would lead to a significant reduction in prescription drug costs. The resulting savings would be reinvested into a critical expansion of Medicare benefits (vision, hearing, dental), low-income protections, and Medigap rights expansion. The primary focus of the bill is to reduce the high cost of prescription drugs paid by the Medicare program and others. The bill provides the authority and tools for the HHS Secretary to negotiate prices for certain drugs without competition. These drug provisions are projected to save $456 billion over 10 years, most of which would be reinvested into strengthening the Medicare program. Among the consumer protections added by the bill are a $2,000 annual out-of-pocket limit on Part D prescription drug costs — which currently has no such cap — and approximately $358 billion in savings, achieved between 2020-2029, in expanded benefits, including $238 billion for dental care, $30 billion for vision care, and $89 billion for hearing services.

All Over the Map: Medicaid Expansion and Work Requirement Considerations

The status of Medicaid expansion and regulation at the outset of 2020 offered a mixture of shifting and uncertain dimensions. As Modern Healthcare’s Harris Meyer reported , “At least three more states considered expanding Medicaid to low-income adults. Republican lawmakers in North Carolina stymied Democratic Gov. Roy Cooper’s expansion push but say they’re open to considering it next year. Oklahoma supporters gathered enough signatures to place expansion on the ballot next November. And Georgia Republican Gov. Brian Kemp proposed a partial expansion covering those at up to 100% of the federal poverty level, even though the CMS rejected Utah’s similar proposal in July. On the other hand, the Trump administration and GOP leaders in Tennessee and Utah are considering plans to shift Medicaid from an open-ended entitlement program to a capped federal funding model. Healthcare leaders fear cuts under this structure, though some say it could boost funding at least in the short term.” The most contentious issue — the imposition of work requirements for Medicaid eligibility — continues to churn as the legality of the requirements awaits further judicial action. Nevertheless, in a year-end announcement by CMS, as reported by the Associated Press, Utah’s work requirement proposal gained a go-ahead. “The Trump administration has generally taken a favorable view toward work requirements, and nearly 20 states have asked to implement them. A number of states, though, have begun backing away after a federal court decision in March blocked the requirements in Arkansas and Kentucky. Work requirement programs have since been suspended or dropped in states such as Arizona, New Hampshire, Indiana and Maine. In Utah, however, officials argue their ‘self-sufficiency’ requirement is different ‘because it's based on efforts to look for work rather than work a certain number of hours,’ said Nate Checketts, deputy director at the Utah Department of Health. It also includes exceptions for many people, including those who are 60 or older, pregnant or caring for young children. As many as 80% of people who qualify for Medicaid could be exempt from the work requirement,’ Checketts said. ‘People who are subject to the requirement will need to complete an online job assessment, web-based training programs and 48 job searches within the first three months of being eligible for Medicaid.’”

New Medicare Long-Term Care Patient-Driven Payment Model (PDPM) Troubles

In the wake of the implementation of the new payment system for Medicare long-term care — the Patient-Driven Payment Model (PDPM) — patient advocates have responded with both alarm over its possible effects on patient care and advice on how to ensure that needed care is provided under the new rules. As the Center for Medicare Advocacy explains , “The prior system, called Resource Utilization Groups (RUGs), paid higher rates for residents receiving more therapy — the more minutes of therapy billed to Medicare, the higher the reimbursement to the SNF. CMS intentionally reversed the financial incentives in PDPM and explicitly reported in the final rules that it would pay SNFs more when they provided no therapy and less when they provided any therapy. CMS also authorized SNFs to provide up to 25% of therapy, by discipline, as group or concurrent therapy, rather than as individual therapy. Under RUGs, 99% of therapy was individual, and CMS still considers individual therapy the appropriate mode of therapy for most residents. SNFs have responded to the financial incentives by quickly laying off therapists and changing the type of therapy they provide. Eligibility and coverage criteria for SNFs, however, did not change with PDPM. Beneficiaries continue to qualify for SNF coverage under Part A if they require skilled nursing services seven days a week or skilled therapy services five days a week or a combination of skilled nursing and therapy services seven days a week. Residents’ actual need for therapy also did not change with PDPM. Residents facing any change in therapy should work with their therapists and physicians and request a care planning meeting to discuss why and how their therapy is changing and why they need individual therapy. At the same time residents should not be expected to challenge SNFs’ changing therapy practices solely on their own. Looking for strength and safety in numbers, they may also choose to raise therapy concerns at resident council meetings; file a formal grievance with the facility for failure to provide appropriate therapy; contact the nursing home ombudsman program; file a complaint with the state survey agency; and contact CMS to voice their concerns.

While SNFs were the first post-hospital entities to undergo the reimbursement overhaul on October 1, the New Year extends the PDPM model to Medicare home health services. “The home health sector,” reports Modern Healthcare’s Alex Kacik, “has been preparing for the implementation of the new Patient-Driven Groupings Model, which will no longer base pay on therapy hours and will reimburse 30-day periods of care instead of 60-day stints come Jan. 1. The new pay model is meant to shift the focus from the volume of services provided to one that relies on patient characteristics. Home health agencies that have focused on therapy almost exclusively could see significant revenue declines. While therapy services are poised to decline, home health providers are looking to grow their specialized care offerings. Palliative care, veteran-specific care and mental health services are projected to grow the most over the next two years, according to estimates.

Recent Statistics on Unpaid Eldercare

In late November the Bureau of Labor Statistics released a wide-ranging set of statistics on unpaid eldercare in the United States from 2017 to 2018. The statistics, based on the American Time Use survey, can be downloaded here .

Family Caregiving Advisory Council Request for Information

The Administration for Community Living and the Family Caregiving Advisory Council are requesting input from individuals and organizations to assist in the development of the initial report authorized by the the Recognize, Assist, Inform, Support and Engage (RAISE) Family Caregivers Act of 2017. The deadline for submission is February 7, 2020.

More Americans Are Dying at Home and Families Shoulder the Complex Care

For the first time in over a half century, writes The New York Times’ Gina Kolata, “more people in the United States are dying at home than in hospitals, a remarkable turnabout in Americans’ view of a so-called ‘good death.’” Reporting on a study published in the New England Journal of Medicine, Kolata notes that “Americans have long said that they prefer to die at home, not in an institutional setting. Many are horrified by the prospect of expiring under fluorescent lights, hooked to ventilators, feeding tubes and other devices that only prolong the inevitable. Advocacy groups have encouraged families to have difficult conversations about end-of-life care, which often reveal that older relatives do not want heroic measures to extend their lives in hospitals. Hospice care, usually delivered at home, is more available than ever before.” At the same time, however, there is another side to the story. “‘We send very very sick, complicated patients home under the care of family members who are not trained professionals,’ said Dr. Diane Meier, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York. Margaret Peterson, 58, a fellow at the Chicago Center for Family Health,” Kolata writes, “cared for her terminally ill husband, Dwight, at home for four long years. A paraplegic adamant that he wanted to die at home, he was discharged from a hospital in 2012 and enrolled in hospice care, because he was not expected to survive long. But he confounded expectations, living for four years. Ms. Peterson was his caregiver, along with a home health aide once a week and nurses from a hospice. The burden was crushing, she recalled, and her husband’s suffering in the last few days seemed needless. ‘There is a kind of fantasy where if you make all the right choices, you get this beautiful and peaceful death,’ she added. ‘But you can do everything right and still have an unpredictable and tragic experience. I don’t think families or caregivers understand what it’s like to die at home,’ she said. ‘Even with hospice care, families are the front-line caregivers. Ninety-nine minutes out of 100 the family is on its own.’”

Sobering Look at the Hospital Readmission Reduction Program

Catching up on a Caregiving Policy Digest topic covered in numerous editions, 2019 saw continued debate about the impact of CMS’s Hospital Readmission Reduction Program (HRRP). Last October, Kaiser Health News’ Jordan Rau had reported , “Medicare (has just) cut payments to 2,583 hospitals, continuing the Affordable Care Act’s eight-year campaign to financially pressure hospitals into reducing the number of patients who return for a second stay within a month. The severity and broad application of the penalties, which Medicare estimates will cost hospitals $563 million over a year, follows the trend of the past few years. Of the 3,129 general hospitals evaluated in the Hospital Readmission Reduction Program, 83% received a penalty, which will be deducted from each payment for a Medicare patient stay over the next fiscal year. Although Medicare began applying the penalties in 2012, disagreements continue about whether they have improved patient safety. On the positive side,” Rau reported, “they have encouraged hospitals to focus on how their patients recuperate, and some now assist them in procuring medications and follow-up appointments. But the hospital industry and some academics have raised concerns that some hospitals may be avoiding readmitting patients who require additional inpatient care out of fear of the financial repercussions, while others have said the program is not showing major benefits.”

Casting new doubt on the program’s benefits, Harvard and University of Washington researchers, including an often-skeptical Dr. Karen E. Joynt Maddox, have now found — in a study of Medicare beneficiaries admitted to hospital for heart failure, acute myocardial infarction, and pneumonia in the U.S. between 2012 and 2015 — “an increase (emphasis added) in total hospital revisits within 30 days of discharge despite a reduction in 30-day readmissions. This increase was because of a rise in treat-and-discharge visits to an emergency department and observation stays within 30 days of discharge, which on a national level, exceeded the decline in readmissions. Our finding of increased healthcare use during this period was more pronounced after we included all encounters within 30 days of discharge — rather than simply including the first. If reductions in readmissions were being driven by widespread improvements in discharge planning, care transitions and post-discharge care after a hospital stay (as intended by the HRRP), total hospital revisits within 30 days of discharge would also be expected to decline. Instead, much of the reduction in readmissions seems to reflect intensified efforts to manage patients who return to a hospital after discharge in observation units and emergency departments, potentially because the 30-day readmission measure used to evaluate hospital performance under the HRRP does not include these types of post-discharge encounters. These observations perhaps explain why previous studies have shown that inpatient quality of care delivered to patients admitted to hospital for heart failure or acute myocardial infarction do not differ at hospitals with high versus low readmission rates. Future policy efforts in the U.S. could benefit from measuring total (emphasis added) hospital revisits within 30 days of discharge instead of solely focusing on readmissions.”

Social Determinants of Health Considerations Present Budgetary Challenges

One of 2019’s most often cited topics — incorporating social determinants of health into healthcare delivery — promises to continue to garner much attention in 2020. Aiming to better focus the ongoing discussion, Health Affairs bloggers have raised concerns about the budgetary implications of the effort. “Several authors suggest,” they write, “that we can lower health care spending by ‘investing in the social safety net.’ People would be healthier, goes the thinking, and would have less need for medical services. There are several reasons to doubt this argument, if only because rising prices for medical services are driving national health care expenditures more than rising medical need. States are the principal spenders when it comes to social factors, and without raising taxes, state and local budgets simply don’t have the money to invest more in public welfare. Rarely is the topic of excessive health care spending framed as an opportunity cost, which limits states’ ability to provide other services that can have an even larger impact on population health. In addition to the conceptual barriers, funding and administrative agencies for medical care and social services are siloed in many, if not most, states, making it challenging at best to blend funding for broader health investments. But the largest challenge to shifting spending toward social services may lie with persuading the American public that we are making an implicit tradeoff between exorbitantly priced health care and the nation’s health. In prioritizing medical care over social services, education, and the other community conditions that determine health, policy makers and legislators have been doing what people want, which is to ensure insurance coverage. They know that there are many factors that can put their health at risk, such as stress, smoking, and lack of exercise, but that has not translated into a demand for a systematic effort to address the multiple community conditions that affect everyone’s health. If we want lawmakers to make different decisions about how to allocate tax dollars, voters will need to understand that medical care is responsible for only a fraction of the health and well-being of their communities. They need to see that allowing health care costs to continue to rise faster than the rest of the economy not only affects their pocketbooks but also their overall health.”

Latest on Alzheimer’s Disease and Cognitive Decline

No less prevalent — indeed more so — in the upcoming 2020 list of ongoing challenges are cognitive decline and Alzheimer’s disease: their burden on sufferers and their caregivers, and their seeming imperviousness to treatment. Several end-of-year items were notable:

EARLY DIAGNOSIS

DEPRESSION AND ANXIETY

BLOOD PRESSURE AND STATIN DRUGS

Medical Cannabis: Treatment Protocol for Older Patients

The recent death of LSD pioneer and longtime American guru Baba Ram Dass (née Richard Alpert) may well resonate among the generation for whom pot smoking was once, literally, a guilty pleasure, but who are now aging in an era of increasing medical cannabis (MC) legalization. They may be interested to know that Israeli researchers have developed an extensive treatment protocol for older patients’ MC use. “The regulations of cannabis and its products vary by country, which affects the clinical experience of physicians. The initially approved dosing is 20 grams of cannabis compound per month (0.6 grams per day), with a cannabis product that contains the lowest concentration of active ingredients. Our results show that cannabis was well tolerated by most of our patients with a relatively low number of adverse events, and specifically, serious adverse events. Most of the patients were satisfied with the treatment and believed it was beneficial to their general health. However, the treatment is not suitable for all patients, and its use should be considered after failure of evidence-based treatments. Slow titration and frequent monitoring are the cornerstones of cannabis treatment for older adults. Potential indications for MC use in older adults include pain, sleep disturbances, nausea and vomiting, Parkinson’s disease, post-traumatic stress disorder, dementia, and palliation. The potential risks of ingestion should not be disregarded, and the emphasis needs to be polypharmacy, pharmacokinetic changes, nervous system impairment, and increased cardiovascular risk. After individual consideration and a personal risk-benefit analysis for each patient, MC treatment should be initiated slowly and gradually.

New Antibiotic Drug Development in Decline As Drug-Resistant Bacteria Threatens

Antibiotic overutilization commanded much attention in 2019 as the spread of deadly, drug-resistant bacteria threatened increasing numbers of patients. At the same time, reports The New York Times’ Andrew Jacobs, “At a time when germs are growing more resistant to common antibiotics, many companies that are developing new versions of the drugs are hemorrhaging money and going out of business, gravely undermining efforts to contain the spread of deadly, drug-resistant bacteria. The problem is straightforward: The companies that have invested billions to develop the drugs have not found a way to make money selling them. Most antibiotics are prescribed for just days or weeks — unlike medicines for chronic conditions like diabetes or rheumatoid arthritis that have been blockbusters — and many hospitals have been unwilling to pay high prices for the new therapies. The challenges facing antibiotic makers come at a time when many of the drugs designed to vanquish infections are becoming ineffective against bacteria and fungi, as overuse of the decades-old drugs has spurred them to develop defenses against the medicines. The industry faces another challenge: After years of being bombarded with warnings against profligate use of antibiotics, doctors have become reluctant to prescribe the newest medications, limiting the ability of companies to recoup the investment spent to discover the compounds and win regulatory approval. And in their drive to save money, many hospital pharmacies will dispense cheaper generics even when a newer drug is far superior. ‘You’d never tell a cancer patient, Why don’t you try a 1950s drug first and if it doesn’t work, we’ll move on to one from the 1980s,’ said Kevin Outterson, the executive director of CARB-X, a government-funded nonprofit that provides grants to companies working on antimicrobial resistance. Coming up with new compounds is no easy feat. Only two new classes of antibiotics have been introduced in the last 20 years — most new drugs are variations on existing ones — and the diminishing financial returns have driven most companies from the market. ‘A new antibiotic can cost $2.6 billion to develop,’ said Dr. David Shlaes, a former vice president at Wyeth Pharmaceutical, ‘and the biggest part of that cost is the failures along the way.’”

Hospital Billing: Another Name For Fraud?

“Welcome to the weird world of medical billing,” writes physician and editor-in-chief of Kaiser Health News, Elizabeth Rosenthal, “where the frauds are all legal.” Rosenthal refers to the experience of her husband after he hit a pothole while bicycling at high speed. The result: six broken ribs, a collapsed lung, a broken finger, a broken collarbone and a broken shoulder blade. The treatment he got via paramedics and in the emergency room and intensive care unit were great. The troubles began, as I knew they would, when the bills started arriving. I will not even complain here about some of the crazy high charges: $182 for a basic blood test, $9,289 for two days in a room in intensive care, $20 for a pill that costs pennies at a pharmacy. We have great insurance, which negotiates these rates down. And at least Andrej got and benefited from those services. What I’m talking about here were the bills for things that simply didn’t happen, or only kind-of, sort-of happened, or were mislabeled as things they were not, or were so nebulously defined that I couldn’t figure out what we might be paying for. To be clear, many of the charges that I would call fraudulent — maybe all of them — are technically legal (thanks sometimes to lobbying by providers), but that doesn’t make them right. And no one would accept them if they appeared on bills delivered by a contractor, or a lawyer or an auto mechanic.” Rosenthal sorts the very questionable charges into five categories: medical swag — a $15 sling at Walgreens that was billed at $150; a cover charge — a trauma activation fee of $7,143 to ensure readiness of an emergency room already being paid high rates in order to be ‘ready;’ imposter billings — bills for bedside treatment from people who never came anywhere near the bed to deliver care; drive-by charges – $646 for a PT evaluation for a quick appearance and some boxes checked on the form; and the enforced upgrade — a $481 charge for surgery, as well as $375 for an office visit for a readjustment of a splint using a scissors and tape. “Why do insurers pay?” Rosenthal asks. “Partly because insurers have no way to know whether you got a particular item or service. But also because it’s not worth their time to investigate the millions of medical interactions they write checks for each day. So what is the appropriate payment for swag I didn’t ask for? In some cases, zero; in others, far less than was paid. And yet, these are all everyday, normal experiences in today’s health care system, and they may be perfectly legal. If we want to tame the costs in our $3 trillion health system, we’ve got to rein in this behavior, which is fraud by any other name.”

Frailty and the Risks of Surgery

Researchers, writes The New York Times Paula Span, have found that older-patient frailty is a major risk factor in undergoing even minor surgical procedures. “Frail, older patients frequently undergo such operations, which surgeons tend to see as routine, simple fixes — but may not be. ‘Our data indicate that there are no low-risk procedures among patients who are frail,’ Dr. Daniel Hall and his co-authors concluded in their study. What is frailty? ‘It’s an accumulation of problems that leave the patient vulnerable to stressors,’ said Dr. Ronnie Rosenthal, a surgeon at the Yale School of Medicine. ‘And surgery is a big stress. Even in healthy patients, surgery demands a lot of reserve from your body.’ But when they become frail, ‘people already use whatever reserve they have just to maintain their daily lives.’ Dr. Hall and his colleagues developed a tool they called the risk analysis index. It allows them to calculate frailty based on illnesses, cognitive decline, ability to perform activities of daily living and other factors derived from medical records. Previous studies have shown that surgery poses higher risks for such patients, but ‘does frailty only matter for the big operations?’ Dr. Hall wondered. Results from the new study, limited to non-cardiac procedures, appear to answer that question. Surgeons consider operations high-risk if their 30-day mortality rate exceeds 1 percent. But for frail patients, even the lowest-risk procedures — including removing a cyst from the hand or wrist, repairing a hernia or removing an appendix — had a 1.5 percent mortality rate within 30 days. For the very frail, the figure was more than 10 percent. A moderate-risk procedure like gall bladder removal or joint replacement involved a risk of death that was higher than 5 percent within a month for frail patients, and a nearly 19 percent risk for the very frail. Those numbers rose over time. By 90 days, mortality after supposedly low-risk surgery climbed to 5 percent in the frail and about 23 percent in the very frail; for moderate-risk operations, the rates were about 11 percent and 34 percent, respectively.”

The Robot Caregiver Is Coming

“Would you let a robot take care of your mother?” asks The New York Times’ Maggie Jackson. “An aging population is fueling the rise of the robot caregiver, as the devices that are moving into the homes and hearts of the aging and sick offer new forms of friendship and aid. With the global 65-and-over population projected to more than double by 2050 and the ranks of working age people shrinking in many developed countries, care robots are increasingly seen as an antidote to the burden of longer, lonelier human lives. Winsome tabletop robots now remind elders to take their medications and a walk, while others in research prototype can fetch a snack or offer consoling words to a dying patient. Hundreds of thousands of ‘Joy for All’ robotic cats and dogs designed as companions for older people have been sold in the U.S. since their 2016 debut. Sales of robots to assist older adults and people with disabilities are expected to rise 25 percent annually through 2022, according to the industry group International Federation of Robotics. Yet perhaps we should be deeply concerned about the ethics of their use. At stake is the future of what it means to be human, and what it means to care. Issues of freedom and dignity are most urgently raised by robots that are built to befriend, advise and monitor seniors. This is Artificial Intelligence with wide, blinking eyes and a level of sociability that is both the source of its power to help and its greatest moral hazard. When do a robot assistant’s prompts to a senior to call a friend become coercion of the cognitively frail? Will Grandma’s robot pet inspire more family conversation or allow her kin to turn away from the demanding work of supporting someone who is ill or in pain? ‘Robots, if they are used the right way and work well, can help people preserve their dignity,’ says Matthias Scheutz, a roboticist who directs Tufts University’s Human-Robot Interaction Lab. ‘What I find morally dubious is to push the social aspect of these machines when it’s just a facade, a puppet. It’s deception technology.’ Some worry robot care would carry a stigma: the potential of being seen as ‘not worth human company,’ said one participant in a study of potential users with mild cognitive impairments. Humans should know if they are dealing with an algorithm or robot and be able to understand its limits and capabilities. One recommendation to industry is for care robots to have a ‘why-did-you-do-that’ button so users can demand an explanation of its actions, from promoting a product to calling the doctor. Meanwhile, Constance Gemson talks fondly of the aides who took her mother out to lunch, gently bathed and fed her, and took the time to suggest a new ChapStick, but she also remembers the robotic cat affectionately. As we sat together in a Manhattan cafe one fall day, she said almost as if to herself, ‘I think I should give them a call and say hello.’”

Bringing Palliative and Supportive Care to Rural Alabama

While palliative medical care services are experiencing significant growth, their availability faces particular obstacles in underserved rural communities. Health Affairs writer Charlotte Huff gives readers an in-depth look at one community’s attempt to overcome those obstacles. The locale is Alabama and the institution at the center of the outreach effort is the University of Alabama at Birmingham (UAB). “UAB has expanded its house calls program to include palliative care visits. They’ve created an advisory group of African American pastors from Birmingham to gain their insights into how to improve conversations with black patients facing serious diagnoses. They’re tapping video technology and, beginning this year, have been more frequently conducting virtual palliative consults with clinicians and patients in more rural areas of the state. ‘We’re trying to put ourselves closer to where the patients are,’ says Rodney Tucker, a palliative medicine physician who directs the UAB Center for Palliative and Supportive Care. In the process, Tucker and his colleagues say they’re working to better understand and narrow the cultural and religious divides that can further complicate the already emotional discussions and decisions surrounding a life-limiting illness.

“Religion and faith represent a cornerstone for the vast majority of families in Alabama. And the state is home to a sizable African American population — accounting for nearly 27 percent of residents statewide and nearly 44 percent of those living in Birmingham’s Jefferson County. National data show that African Americans are less likely than white patients to choose hospice in the final weeks and months of life. ‘While patients might sometimes perceive hospice and palliative care as one and the same,’ Tucker says, ‘with palliative medicine they can still get aggressive treatment for their disease while also getting help with their symptoms, counseling, and spiritual support, among other services. Palliative care seeks to provide an extra layer of care, ideally starting shortly after a serious diagnosis, whether that’s advanced cancer, chronic heart failure, or a neurological disease. It’s not just waiting to die and getting the hospice services while you die. It’s more about how you’re living your serious illness journey.’ On the palliative care unit Estella Woods-Holmes, who has worked there since it opened and is now the nurse manager, grew up in the Selma, Alabama area, a predominantly African American and religious region of the state. Helping patients and family members navigate through their final days wasn’t where she would have imagined herself for so many years.’ When death came, they hung on to the last,’ she said. ‘They would just really believe that they’re going to be healed, no matter what, how sick they were.’ But through the years, as she’s shared her work back home with loved ones, she’s tried to convey that clinicians are not withholding care, but rather focusing on comfort — enabling the natural dying process to unfold, so people can leave this life more peacefully without being tied to machines.’ Not all of us are going to be healed here,’ Woods-Holmes says. ‘But what I have seen happen has been such a blessing to a sick patient who has been toiling and going through an illness for so long. After seeing that a few times, I really felt like, this is where I was supposed to end up.’”

‘A Life Well-Lived and a Death Well-Conceived’

“I have discovered that Washington, D.C., has a law that will help me kill myself. Please find out about that.” My terminally ill mother wanted to end her own life, writes Tim Zimmerman in an engrossing memoir of his attempt to help 81-year-old Corinne (Teeny) Zimmerman avail herself of the D.C.’s Death With Dignity Act. “The D.C. law does not allow physicians or others to directly administer lethal measures (euthanasia). Instead, it gives mentally competent patients access to end-of-life drugs that they can administer themselves if and when they choose. Simply having the drugs on hand can be a source of comfort for terminally ill patients. Those drugs, which freed my mother from the miseries of an incurable disease, proved to be the greatest mercy of her 20-month battle with cancer. Getting them, however, was a journey filled with stress, uncertainty — and unexpected hurdles. Navigating the Death With Dignity Act isn’t a casual process, and it shouldn’t be. It requires deliberate steps that aim to prevent patients from killing themselves without due consideration or under pressure from anyone else. By the time she discovered the law, Teeny was unable to breathe well without an oxygen concentrator; she had a racking cough that was difficult to control and made restful sleep, or even easy conversation, impossible. She had always loved food; now, she couldn’t find anything that tasted good and was forced to choke down whatever she could manage, supplemented by protein shakes. She was taking a lot of morphine and was mostly confined to her house. ‘Teeny full of life’ was starting to fade. Always fiercely independent, she now required help with everything: bathing, getting to bed, changing clothes. She worked hard to maintain her composure, but she absolutely hated being cared for — by my sister and me, and eventually also by a home health aide who covered the overnight hours. In early July, as Teeny lay in the hospital, it had been more than a month since she had completed her Death With Dignity paperwork, and we had been searching in vain for weeks for a pharmacy to fill her lethal Seconal prescription. I was starting to believe that the Death With Dignity Act was just a cruel tease, an admirably progressive and humane idea that didn’t actually work.” Finally, Zimmerman recounts, the six-week long quest, aided by Compassion and Choices, a supporter of aid-in-dying laws across the country, produced a pharmacist’s bag full of the necessary pills. “My sister Quinny (down from Boston for the previous two weeks) and I put out the word for all the grandchildren to come to Washington. One flew in from Poland. On that final Sunday, with everyone under strict orders not to be sad, she orchestrated one final celebration: a champagne toast, to give thanks for a life well-lived and a death well-conceived. ‘I’m ready,’ she eventually said, and picked up the red glass. My sister held her hand as she swallowed it down. My sister’s daughter gently stroked her hair. Just around the corner, my 16-year-old daughter sang Leonard Cohen’s ‘Hallelujah’ for her. And she went to sleep.”

Long-Term Care in Rural Nebraska

The Washington Post’s Eli Saslow tells a moving tale of Earl and Marlene Kennedy, married for 63 years, as he battles advanced Parkinson’s disease in a nursing home while she struggles to overcome the challenges of a Nebraska winter to reach his side. The struggle is made all the harder by the distance between their home and the SNF. “In the first months after her husband’s fall, Marlene, 84, had helped Earl Kennedy move into a nursing home three minutes from their house in Broken Bow, a town of 3,000, close enough that she could visit him twice a day. But then that nursing home went bankrupt and closed in May, one of more than 260 rural nursing facilities across the country to shut down for financial reasons in the past three years, sending another family on a desperate search for the basic medical care that is disappearing from rural America. Marlene tried to get Earl into the only other nursing home in Broken Bow, but that facility had managed to stay solvent, in part, by limiting the number of residents on Medicaid. The nursing homes in Ainsworth and Minden had already closed, and the one located next to a grain elevator in Callaway was running a waiting list. The best option Marlene could find was a shared room in the town of Cozad, more than 50 miles away down remote two-lane roads, and Marlene had been making the trip back and forth several times each week ever since. She and Earl had rarely traveled outside of Nebraska, and they’d never been on an airplane. Many of their trips together in recent years had been medical trips, the escalating cost of a life spent in rural America, which in the past decade has lost at least 250 maternity wards, 115 hospitals, 3,500 primary care doctors, 2,000 medical specialists and hundreds of nursing homes. Earl was almost 88, and he could no longer walk or eat solid foods. There was no place left in town where he could live safely until he died. She’d worried that Earl’s bed was pressed too close to the window on subfreezing nights, and that the khakis she’d bought for him to wear weren’t thick enough, and that he was losing too much weight to keep himself warm, and that if he wasn’t warm he wouldn’t be able to sleep. She’d worried about what he might be doing if he wasn’t sleeping, since his eyesight made it difficult for him to read or watch TV or do much of anything except move back and forth from his bed to his wheelchair, in which case 10 days might have felt to him like forever. She’d worried he felt confused by her absence, or upset, or scared, or even abandoned. Marlene walked down a tiled hallway with fluorescent lighting to a small room with an American flag taped beside the door. ‘I wanted to come just about every day, but this weather had other ideas,’ she told him. ‘You missed me, though, Earl. Didn’t you?’ He smiled and reached over to wrap his arm around her shoulder. ‘Yeah, I knew it,’ she said. ‘You missed me.’ Earl had usually been the one who drove during their marriage, but Marlene had put 14,000 miles on the car in the past several months. She drove out of Broken Bow and past the feedlots on the edge of town. She turned through the cornfields. She went over the frozen creek. She slowed for the dip. She waved to a tractor. She went by the grain elevator. She looked out the front windshield at the rolling prairie and counted off the long miles, until she was walking into Earl’s room. She saw him looking out the window and waiting in his chair, where she’d left him a few days earlier and would soon have to leave him again. ‘I’m here,’ she said, putting her arm on his shoulder. ‘I’ll stay for as long as I can.’”

The Winners!

In celebration of the 12th year of the Innovations in Alzheimer’s Caregiving Awards, The Rosalinde and Arthur Gilbert Foundation , the Helen Daniels Bader Fund, A Bader Philanthropy , and Family Caregiver Alliance are pleased to announce three winning organizations — each delivering a state-of-the-art program that addresses the needs of caregivers and those they care for with Alzheimer’s disease or a related condition. Read about the winning programs in the January 6 press release .

FCA Webinar: Genuine Resilience is Closer (and Easier) Than You May Think

In this free webinar (Wednesday, January 29, 11 a.m. Pacific time), Roy Remer, executive director, of San Francisco’s Zen Caregiving Project (formerly Zen Hospice Project) will introduce caregivers to key tools essential for coping with stress, and provide simple practices that family caregivers can integrate into their lives to build resilience. Further information and online registration are available on FCA’s website .

FCA’s Executive Director, Kathy Kelly, Responds to Pete Buttigieg’s Plan for Long-Term Care

Democratic presidential candidate and Mayor Pete Buttigieg of South Bend, Indiana, recently addressed the long-term care challenge with his Dignity and Security in Retirement proposal. Buttigieg’s plan was covered in a Next Avenue piece from Liz Seegert with comments from policy experts, including FCA’s Kathy Kelly. Regarding Social Security credits for caregiving, Kelly states, “It’s not unusual for a family to have a caregiver, most often a woman, who drops out of the workforce, does not accrue enough Social Security credit and then needs to go back to work at a more advanced age, where it might be more difficult to find a job or have to accept a lower wage. These caregivers eventually end up retiring with fewer assets. It’s a long-term consequence of not shifting U.S. policies to compensate or recognize contributions of family members.”

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Are You Receiving Connections?

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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CREDITS



Editor: Alan K. Kaplan, (attorney and health policy consultant)

Contributor: Kathleen Kelly (executive director)

Layout: Francesca Pera (communications specialist)

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