In This Issue: Liftoff for the RAISE Act Family Caregiving Advisory Council :: “surprise billing” fix hits lobbying buzzsaw :: “observation stay” appeals case reaches trial court :: Indiana hopes for less contentious Medicaid work requirements :: SNF oversight proposals still open for comment :: SNF pre-admission arbitration agreements greenlighted, with restrictions :: bipartisan Comprehensive Care Caucus :: legislation targets guardianship issues :: surgeons identify major post-up risks for older patients :: some reassuring news about older patients’ cognition risks after major surgery :: anticholinergic drugs induce dementia symptoms :: Johns Hopkins expands research into psychedelic therapies for cognitive diseases :: technological assistance for home care aides :: Milbank views the future of telehealth :: the promise versus the reality of assisted living :: the reality of home dialysis for kidney disease :: “stubborn” aging parents and their children :: to operate or not when elderly patients and surgeons weigh the risks :: “chat benches” offer low-tech antidote to loneliness :: the unmet need for home health care aides :: Marjorie Salmon’s round-the-clock caretaking for Alzheimer’s patient Bob Dettmer

“The next day, Marjorie tried a new approach. ‘I went in there and I said, Good morning, sunshine! It’s a beautiful morning! I’m going to give you some orange juice, and after that you’re going to take a nice shower, and after that I got a big breakfast for you!’ She has kept up the sweet talk ever since. Somehow it pierced the fog. Bob grew more connected; his memory improved. He started changing his own wet diaper. Alzheimer’s does not get better in the long run, but for now, marveled Marjorie on a recent Thursday, ‘It’s like I can get through to him. The other day he looked at me and said, “You’re a pretty woman.” I said, Thank you, Bob, thank you. Made my day.’”

— Marjorie Salmon, home health aide, talking to reporter Andy Newman

(see last item below)

RAISE Act Family Caregiving Advisory Council Launched

It was liftoff time for the RAISE Act Family Caregiving Advisory Council on August 28 as the much-anticipated federal entity met for the first time to receive its marching orders and listen to a variety of caregiving experts discuss the great significance and breadth of the panel’s challenge. Organized by HHS’s Administration for Community Living, the meeting brought 15 nongovernmental and numerous federal agency officials together for the two-day event. The Council’s website contains complete membership information, and it will shortly post the first meetings proceedings and ongoing information concerning the group’s progress in developing a national caregiving strategy for congressional review.

‘Surprise Billing’ Legislation Teetering

Congress has returned from its summer recess with the fate of “surprise billing” legislation very much up in the air. As Modern Healthcare’s Susannah Luthi reports , “Physician groups' public relations, advertising and lobbying blitz against Congress’ front-line proposals to end surprise medical bills reached such a pitch in August that congressional staff worry the entire effort will collapse. State and national hospital and physician groups are working their delegations. And all the opposition is jeopardizing Congress’ ability to get anything done this year. Some on Capitol Hill are convinced that’s exactly the lobbying groups’ goal. Provider groups are adamant this isn’t the case. ‘We want to see legislation,’ said Chip Kahn, CEO of the Federation of American Hospitals, which represents for-profit hospitals. ‘It's a problem we can’t solve ourselves — I wish we could — and we need legislation to ensure patients don’t suffer from sticker shock, that their copayments are reasonable and within the bounds of their coverage.’ The growing perception on Capitol Hill, however, is that balance billing, reportedly isolated to bad actors, has trickled into the provider business model as leverage for higher rates — particularly with the rise of physician staffing companies. Provider groups counter this by saying they want to contract with networks. But they also want leverage with insurers. Meanwhile, they have accelerated efforts to prevent a vote on the benchmark proposal since lawmakers left Washington for their home states for the August recess. One aide described the past month as a ‘pummeling’ of lawmakers — in district meetings, in local newspapers and on TV.”

‘Observation Stay’ Class-Action Lawsuit Goes to Trial

Meanwhile, a related aspect of the “surprise bill” controversy played out, not on Capitol Hill, but in a Hartford, Connecticut, courtroom where a very long-running lawsuit — challenging post-“observation stay” non-appealable denials of skilled home coverage — finally reached the trial stage. As Kaiser Health News’ Susan Jaffe reports , “Medicare paid for Betty Gordon’s knee replacement surgery in March, but the 72-year-old former high school teacher needed a nursing home stay and care at home to recover. Yet Medicare wouldn’t pay for that. So, Gordon is stuck with a $7,000 bill she can’t afford — and, as if that were not bad enough, she can’t appeal. The reasons Medicare won’t pay lie in the maze of regulations surrounding something called ‘observation care.’ Patients, like Gordon, receive observation care in the hospital when their doctors think they are too sick to go home but not sick enough to be admitted. They stay overnight or longer, usually in regular hospital rooms, getting some of the same services and treatment (often for the same problems) as an admitted patient — intravenous fluids, medications and other treatment, diagnostic tests and round-the-clock care they can get only in a hospital. After knee replacement surgery, Gordon needed to go to a nursing home, but because she had been in outpatient care and not hospitalized as an admitted patient for three days, Medicare would not cover her care there. There’s another twist: Patients might want to file an appeal, as they can with many other Medicare decisions. But that is not allowed if the dispute involves observation care. ‘This is about whether the government can take away health care coverage you may be entitled to and leave you no opportunity to fight for it,’ said Alice Bers, litigation director at the Center for Medicare Advocacy, one of the groups representing the plaintiffs. If they win, people with traditional Medicare who received observation care services for three days or longer since Jan. 1, 2009, could file appeals seeking reimbursement for bills Medicare would have paid had they been admitted to the hospital. More than 1.3 million observation claims meet these criteria for the 10-year period through 2017, according to the most recently available government data.”

New Version of Legislation Addressing ‘Observation Stay’

The class-action lawsuit seeking to establish an observation stay appeal right, reports Skilled Nursing News’ Alex Spanko, would have become unnecessary if Congress had acted on legislation ( H.R.1682) proposed since 2011 that would remove the distinction between inpatient and observation stays for the purposes of nursing home Medicare coverage. “Whether a patient is in the hospital for three days as an inpatient, or for three days under ‘observation status’ — three days is three days, and quibbling over semantics should not keep Americans from accessing the care they’ve been prescribed by health care professionals, or force them to go into medical debt in order to cover the cost,” said Rep. Joe Courtney, a Connecticut Democrat, in a statement announcing the most recent version of the legislation he introduced last March.  

Work Requirements: Indiana Takes a ‘Softer’ Approach

Medicaid work requirements have proved contentious and engendered pushback in several, thus far, successful lawsuits filed to prevent their imposition. In one state, however, reports The Washington Post’s Paige Winfield Cunningham, the requirement appears to be proceeding in a kinder, gentler fashion without arousing fierce opposition. “Like other states, Indiana recently imposed work requirements on some of the state’s 1.4 million Hoosiers who receive benefits under the health program for low-income Americans. But only a fraction of those Medicaid recipients, estimated at 70,000 people, will actually be affected. In fact, the state’s secretary of health has made a bold promise that not a single person will lose coverage under its ‘Gateway to Work’ program. ‘We don’t want to hurt anybody, we’re just making progress in Indiana in improving our health outcomes,’ said Indiana Family and Social Services Administration Secretary Jennifer Walthall. So far there has been no massive drop-off in coverage as there has been in Arkansas, where ultimately more than 18,000 enrollees — about one-fourth of those subject to work requirements there — were booted before a federal judge ruled against the state. But not everyone buys that argument. Fran Quigley, director of the Health and Human Rights Clinic at Indiana University’s law school, said he believes work requirements will cause people to lose coverage and won’t improve their overall health. Officials, however, say many of those who would be affected may already be employed or involved in other activities that satisfy the requirements, including job searching, job training, volunteering or taking college courses. Furthermore, there is no ‘lockout’ period for failing to meet the requirements, which would prevent someone who loses coverage from immediately reentering the program once they comply with it.”

Upcoming Deadline to Comment on CMS Revisions to Nursing Facility Regulations

Comments will be accepted until September 16 on proposed regulations issued by CMS that revise nursing facility requirements regarding such matters as the frequency of facility assessment (every two years instead of annually), physician evaluation of the need for psychotropic drugs, the on-site availability of an infection preventionist, and the components of SNFs’ Quality Assurance and Performance Improvement (QAPI) program. A very detailed guide to the proposals was offered by the NYS Health Foundation during a webinar whose content and related slides can be viewed here . Weighing in on the potential impacts of the changes, Consumer Voice for Quality Long-Term Care expressed concern that — while CMS believes its proposal balances resident safety and quality of care with regulatory “relief” for facilities — “reduced standards for resident safety, quality care, and residents rights are the price the agency expects residents to pay for less accountability and transparency.” For its part, Justice in Aging, urging individuals and organizations to submit comments on the proposals, is making sample letters available .

CMS Final Rule on SNF Arbitration Agreements

Coincident with its publication of proposed changes, CMS has issued a final regulation regarding the controversial matter of pre-SNF-admission arbitration agreements. The final rule, as the American Bar Association’s Charlie Sabatino observes , “on the one hand mandates that arbitration agreements must not be used as a condition of admission to, or as a requirement for, a resident to continue to receive care at the facility. Moreover, the facility must explicitly inform residents or their representatives of the right not to sign the agreement as a condition of admission, or as a requirement, to continue to receive care at the facility. The intent is to eliminate any pressure or confusion about the need to sign these agreements so that residents and their representatives can decide freely whether to sign or decline signing without fear of repercussions. The rule , in addition to banning the condition of admission establishes a very important 30-day right of rescission of arbitration agreements by the resident or resident representative. This is a critical step in countering the confusion and stress surrounding the signing of documents at admission and to provide time to consult with others and reassess options. At the same time,” Sabatino continues, “the rule does permit the inclusion of such arbitration agreements subject to the enabling conditions. Thus, the final rule now puts a responsibility on all our shoulders: We must educate residents, their families, and the public more emphatically about these agreements and advise them not to sign these at admission or at any time before a dispute arises.”

Senate Bipartisan Comprehensive Care Caucus

A bipartisan group of four senators has formed a Comprehensive Care Caucus seeking improvements in areas of palliative care, coordinated care, and issues impacting caregivers. The group’s first event, held July 31 on Capitol Hill, focused on how to ensure that patients with a serious illness or injury have a comprehensive care plan that is tailored to their specific needs, whether that is with curative treatment or end-of-life hospice care. Questions about the caucus can be emailed to co-chair Sen. Jacky Rosen’s staff member Olga Zoraqi .

Rep. Darren Soto Introduces Guardianship Bill

A bill — HR 4174 — has been introduced in the House to improve oversight of guardianships. While modest in content, the measure reflects concerns that have arisen regarding nefarious actions of some guardians in exercising their authority over individuals in need of support. The bill focuses on oversight and data collection by: designating a National Online Resource Center on Guardianship; authorizing grants for the purpose of developing State Guardianship Databases; and establishing procedures for sharing background check information related to appointed guardians with other jurisdictions. Once a guardianship is imposed, the bill finds, “there are often few safeguards in place to protect against individuals who choose to abuse the system and few states are able to report accurate or detailed guardianship data. A full guardianship order may remove more rights than necessary and may not be the best means of providing support and protection to an individual. If individuals subject to guardianship regain capacity, all or some rights should be quickly and efficiently restored. States should encourage courts to use alter natives to guardianship through State statutes, including the adoption of the Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act, to ensure better protections and control for individuals being considered for guardianship and those pursuing a restoration of their rights.”

Older Patients and Surgery: Risk Factors Identified

In concert with its rollout of the Geriatric Surgery Verification Program ( Caregiving Policy Digest — July 2019) the American College of Surgeons has released a study identifying factors in older patients associated with an inability to return home after an operation. The four characteristics identified among these older patients were: a history of a fall within the past year, preoperative malnutrition as defined by more than 10 percent of unintentional weight loss, postoperative delirium, or a new or worsening pressure ulcer after surgery. “This information empowers physicians to have a conversation with their older surgical patients about the possibility of a stay in an extended care facility, depending on patient characteristics and the nature of the operation they are about to undergo,” said Dr. Lindsey Zhang, a general surgery resident at the University of Chicago Medical Center. Because this study shows geriatric risk factors that appear to be associated with an extended stay in a care facility, its results may lead to quality improvement initiatives in a hospital. “Should we consider nutrition programs for patients with malnutrition,” asked Dr. Zhang, “or create programs to improve function for patients who have had a fall? Do we implement protocols in the postop period to prevent delirium and pressure ulcers? Will these steps lead to more patients going home after surgery? We can't say for sure, but these results provide strong evidence to say it’s worth the effort for a hospital to address these issues.”

Impact of Surgery on Cognitive Decline

Some reassuring findings about older surgical patients have come in a study conducted by American and European physicians: “Major surgery,” reports The Washington Post’s Linda Carroll, “may be tied to a small decline in cognitive functioning when we are older — equivalent, on average, to less than five months of natural brain aging. ‘Our data suggest that, on average, major surgery is associated with only a small cognitive hit,’ said Robert Sanders, an assistant professor in the department of anesthesiology at the University of Wisconsin at Madison, and the study’s senior author. ‘We estimate a cognitive age of 67 years and 10 months for a participant who incurred surgery at the median age of 67 years and 5 months. Major surgery was associated with less cognitive impact than major medical events or stroke although the effect was greater than for minor surgery. Indeed, on average, stroke was associated with a 37-fold larger and medical admissions four-fold larger cognitive effect than major surgery.’ The new report offers ‘good news and bad news,’ said Sandra Weintraub, a professor at Northwestern University’s Feinberg School of Medicine in Chicago. ‘The good news is that for most people the decline wasn’t that great. Having said that, it really puts patients between a rock and a hard place if they’re told they need surgery and worry about losing mental function. I’d like to see physicians take on a little more responsibility in helping make the risks clearer. Even better,’ Weintraub added, ‘would be cognitive testing before surgery because the impact on the brain might be worse in patients who already are developing a brain disease such as Alzheimer’s but have only subtle symptoms.’”

Anticholinergic Drugs and Symptoms of Dementia

“By all accounts,” reports Judith Graham in The Washington Post, “the woman, in her late 60s, appeared to have severe dementia. But Malaz Boustani, a doctor and professor of aging research at Indiana University School of Medicine, suspected something else might be going on. The patient was taking Benadryl for seasonal allergies, another antihistamine for itching, Seroquel (an antipsychotic medication) for mood fluctuations, as well as medications for urinary incontinence and gastrointestinal upset. To various degrees, each of these drugs blocks an important chemical messenger in the brain, namely, acetylcholine. Boustani thought the cumulative impact might be causing the woman’s cognitive difficulties. He was right. Over six months, Boustani and a pharmacist took the patient off those medications and substituted alternative treatments. Miraculously, she appeared to recover completely. Her initial score on the Mini-Mental State Examination had been 11 of 30 — signifying severe dementia — and it shot up to 28, in the normal range.

“An estimated 1 in 4 older adults,” Graham continues, “take anticholinergic drugs — a wide-ranging class of medications used to treat allergies, insomnia, leaky bladders, diarrhea, dizziness, motion sickness, asthma, Parkinson’s disease, chronic obstructive pulmonary disease and various psychiatric disorders. In the brain, acetylcholine plays a key role in attention, concentration, and memory formation and consolidation. Among prescription medicines with strong effects are antidepressants such as imipramine (brand name Tofranil), antihistamines such as hydroxyzine (Vistaril and Atarax), antipsychotics such as clozapine (Clozaril and FazaClo), antispasmodics such as dicyclomine (Bentyl) and drugs for urinary incontinence such as tolterodine (Detrol). In addition to prescription medications, many common over-the-counter drugs have anticholinergic properties, including antihistamines such as Benadryl and Chlor-Trimeton and sleep aids such as Tylenol PM, Aleve PM and Nytol. Several studies have noted an association between anticholinergics and a heightened risk of dementia. It now appears that older adults who take strong anticholinergic medications for one to three years are vulnerable to long-term side effects. ‘Moving patients off anticholinergic drugs requires slow tapering down of medications over three to six months, at a minimum,’ cautioned Nagham Ailabouni, a geriatric pharmacist at the University of Washington School of Pharmacy.”

New Research Center to Study Effectiveness of Psychedelics for Alzheimer’s, PTSD, and Other Diseases

If anti-cholinergic medications should raise cognition red flags for aging patients, perhaps another, previously scorned, group of ingested substances might prove beneficial. That possibility is about to be extensively explored by the first-ever U.S. research center exploring the use of psychedelics as therapies for addiction, PTSD, and Alzheimer’s. The setting will be Johns Hopkins Medicine, where donors have given $17 million to start the Center for Psychedelic and Consciousness Research . The center will focus on how psychedelics affect behavior, brain function, learning and memory, the brain’s biology, and mood. Studies of psilocybin in patients will determine its effectiveness as a new therapy for opioid addiction, Alzheimer’s disease, post-traumatic stress disorder (PTSD), post-treatment Lyme disease syndrome (formerly known as chronic Lyme disease), anorexia nervosa and alcohol use in people with major depression. The researchers hope to create precision medicine treatments tailored to individual patients’ specific needs. “The center’s establishment reflects a new era of research in therapeutics and the mind through studying this unique and remarkable class of pharmacological compounds,” said Roland Griffiths, Ph.D., the center’s director and Hopkins professor of behavioral biology. “In addition to studies on new therapeutics, we plan to investigate creativity and well-being in healthy volunteers that we hope will open up new ways to support human thriving.”

How Tech Can Support the Home Care Workforce

Health Affairs blogger Kezia Scales identifies several categories of technology that offer promise for strengthening the role of the home care workforce, in particular — the two million home health aides and personal care aides in the United States who provide the majority of paid daily assistance for individuals receiving home and community-based services. First on the list is E-learning, the spectrum of methods and modalities ranging from non-interactive resources, such as audio and video files and PowerPoint presentations, to interactive lessons, real-world simulations, online collaborative learning projects, and interactive classrooms. “There are a number of barriers to widely implementing e-learning as a training tool for home care workers. One is the persistent digital divide, which separates those with computer access and literacy from those without. Another challenge is cost. Assistive technologies offer a second potential source of interventions designed to improve facilitating function and independence for individuals living with serious illness or disability in the community. Assistive technology is a large and growing field: The AbleData database, an online resource funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (under the Administration for Community Living), catalogs almost 40,000 assistive devices, systems, and software products. However, the development and dissemination of assistive technologies designed to support home care workers lags — the onus remains on these workers to provide assistance as safely as possible using traditional manual handling techniques. More research is clearly needed on assistive technologies that can support home care workers’ provision of personal assistance in bathrooms, bedrooms, and other spaces within private homes. A third major use for home care workforce-related technology,” Scales writes, “concerns leveraging it to strengthen critically important recruitment and retention efforts. Scheduling, a notoriously difficult task in home care, is a key example. When matching a home care worker and consumer for any given shift, a range of factors must be taken into account, including: the consumer’s needs and preferences; the worker’s skills, availability, location, mode of transportation, and personal characteristics; the connection of each visit to other health-related appointments; geographic clusterization between cases; and more. Despite the complexity of the task, scheduling currently is often completed manually or using rudimentary software.”

Telehealth Services: A Current View

An issue brief from the Milbank Memorial Fund reviews “The Evolving Policy Landscape of Telehealth Services Delivered in the Home and Other Nonclinical Settings.” The Milbank brief provides in-depth discussion of the current Medicaid and commercial insurance telehealth landscape regarding its delivery via synchronous audio-video connection in which patients receive health care at an originating site from health care providers located at a distant site. “Historically, for providers to receive reimbursement for the services, public payers such as Medicaid and Medicare have required patients to be physically located in an approved clinical setting, known as the originating site, while telehealth services are being delivered. The Centers for Medicare and Medicaid Services (CMS), using new leverage provided in the Bipartisan Budget Act of 2018, is finalizing changes that would allow beneficiaries participating in Medicare Advantage plans and the Medicare Shared Savings Program to access additional telehealth benefits, such as receiving telehealth services in their homes, starting in 2020. Recent legislation in some states has focused on expanded telehealth coverage to patients at any originating site. Some state Medicaid programs have also started to allow patients’ homes, or other locations such as workplaces, to serve as originating sites.” Going forward, the authors conclude, telehealth ventures will need to address issues such as equipment access, privacy concerns, particularly with respect to low income and vulnerable populations, avoidance of possible fragmentation of care, and the clinical conditions and types of patients that can be well served by telehealth.

Upcoming Forum/Webcast, Webinar, and a Call for Abstracts

Health Affairs Journal is hosting a forum, both in-person and webcast, on September 24 focusing on Aging and Health: Improving Care for Older Adults. Information and registration for the two-hour event are available here .

The public is also invited to join a webinar the next day, September 25, that will feature the release of the National Academies’ final report on Integrating Social Needs Care into the Delivery of Health Care to Improve the Nation’s Health. The committee’s findings and recommendations will cover expanding social needs care services; better coordinating roles for social needs care providers in interprofessional care teams across the continuum of clinical and community health settings; and optimizing the effectiveness of social services to improve health and healthcare. Recommendations may address areas such as integration of services, training and oversight, workforce recruitment and retention, quality improvement, research and dissemination, and governmental and institutional policy for healthcare delivery and financing.

The International Short Break Association (ISBA) is hosting the 2020 International Respite (Short Break) Conference, Moving Respite Forward, in Madison, Wisconsin, June 16–19, 2020. Intended for everyone who provides, uses, or needs respite/short break services, ISBA is inviting abstracts for 25-minute presentations or 75-minute workshops from family caregivers, individuals who receive respite care, researchers, and caregiving professionals. The abstracts should be related to the following topics: innovative service delivery options throughout the lifespan; advances in research and evaluation; family caregiver perspectives; building capacity and ensuring sustainability; and advocacy and networking for policy change.

The Limitations of Assisted Living

“The assisted living industry is booming,” writes University of California, Berkeley, professor Geeta Anand, “by tapping into the fantasy that we can all be self-sufficient until we die.” The irony of assisted living is, it’s great if you don’t need too much assistance. If you don’t, the social life, the spa-like facilities, the myriad activities and the extensive menus might make assisted living the right choice. But if you have trouble walking or using the bathroom, or have dementia and sometimes wander off, assisting living facilities aren’t the answer, no matter how desperately we wish they were. ‘They put their money into the physical plant. It’s gorgeous,’ said Cristina Flores, a former home health care nurse who has a Ph.D. in nursing health policy. ‘But when it comes to direct care, the facilities are often lacking. The way they market everything is, it’s all about autonomy and independence, which are important concepts. Families and residents don’t realize that these facilities are not designed to provide more than minimal help and monitoring.’ Part of the problem is a lack of regulation. Nursing homes are regulated and inspected and graded for quality to ensure that residents receive adequate care. The federal government does not license or oversee assisted living facilities, and states set minimal rules. Nursing homes are required to have medical directors on staff who review patient medications regularly, while there is usually no such requirement in assisted living. Assisted living has a role to play for the fittest among the elderly, as was its original intent. But if it is to be a long-term solution for seniors who need substantial care, then it needs serious reform, including requirements for higher staffing levels and substantial training.”

Home Dialysis Treatment: What It Looks Like

As Caregiving Policy Digest has previously reported, the Trump Administration, acting through HHS Sec. Alex Lazar, has embarked on an ambitious effort to transform kidney failure care into a predominantly home-centered dialysis treatment system. Kaiser Health News’ Judith Graham looks at how such a system will work in practice by taking readers into several current home dialysis patients’ residences. “It takes determination,” she writes. “Jack Reynolds, 89, prides himself on being disciplined, which has helped him do peritoneal dialysis at home in Dublin, Ohio, seven days a week for 3½ years during the night while he sleeps. With peritoneal dialysis, a fluid called dialysate (a mix of water, electrolytes and salts) is flushed into a patient’s abdomen through a surgically implanted catheter. There, it absorbs waste products and excess fluids over several hours before being drained away. This type of dialysis can be done with or without a machine, several times a day or at night. In Reynolds’ case it takes him 23 minutes to gather everything, clean the area around his catheter and sterilize equipment; it takes about as much time to take things down in the morning. Just before going to sleep, Reynolds hooks up to his dialysis machine, which runs for 7.5 hours. ‘I live a normal, productive life, and I’m determined to make this work,’ he said. In addition to determination,” Graham writes, “home dialysis also requires substantial training and can seem overwhelming. Until last November, when her husband of 68 years died, Mary Epp relied on him to get her ready for peritoneal dialysis, which she receives every night while she sleeps for nine hours. Now, an aide comes in a 7 p.m. to help Epp take a bath and set things up before dialysis begins an hour later. Another woman comes in at 5 a.m. to take her off dialysis, clean everything up and fix her breakfast. ‘I’ve gotten a lot more feeble than I was when home dialysis began in 2012,’ said Epp. But the benefits of home therapy, which is overseen by a team at a dialysis clinic 90 miles away in Birmingham, remain worth it. ‘You just go to bed and wake up the next morning and you’re ready to go and meet the day.’”

‘Mismatched Goals’: Understanding Perceived Stubbornness

Paula Span, The New York Times “New Old Age” columnist, explores an interaction that can be frustrating both for caregiving children and an aging parent: the latter’s perceived “stubbornness.” “Lori Kayne, a geriatric social worker in Bridgewater, New Jersey, can tell such stories. Her late father, whose poor balance had caused multiple falls but no serious injuries, resisted her pleas to use his walker. ‘We had a lot of screaming matches,’ she recalled — but she never prevailed. Then last year, her father fell and fractured several vertebrae. ‘He was in terrible agony for months, but at least he was finally relying on the walker.’ She figured that at 87, he’d grown more reasonable. Nope. ‘As soon as he started to feel better, he refused the walker, even though he knew what could happen.’ The more polite social science term for such skirmishes: mismatched goals. ‘If the goal is not shared,’ gerontologist Dr. Allison Heid explained, ‘the older adult wants to walk to the grocery store himself and the child says, I don’t think it’s a good idea — that’s when conflict can arise.’ Such clashes, and related reports of stubbornness, increase when the parent and child live together, she found. Perceived stubbornness also rises when a parent’s disability increases. ‘When a child steps in, most commonly there’s a safety issue,’ said Heid. ‘The parent may not share those feelings about their capabilities.’ When parents feel thwarted, does resistance really constitute stubbornness? Perhaps their children, who in these studies were not serving as hands-on caregivers, were domineering or intrusive. Stubbornness, Heid suggested, might actually be a positive trait. It shows tenacity, persistence, a sense of control. But stubbornness, it turns out, can also have hurtful consequences. Reasoning with someone who seems impervious to it sounds, well, challenging. ‘It’s a really hard thing, this mismatch between what we need and what we want and what’s good for us,’ said Dr. Marci Gleason, a social psychologist at the University of Texas at Austin. She suggests trying to equalize power in the relationship, allowing the parent to also provide support, even by just listening empathetically to a child’s account of her tough week. ‘It could be beneficial,’ Gleason said, ‘for the relationship to not have it all be one-sided.’”

How Doctors Need to Talk to Older Patients Before Surgery

Two recent articles address the dilemmas and challenges confronting surgeons in advising elderly patients about the decision to undergo surgical procedures. “It’s a common complaint:” writes Judith Graham: “Surgeons don’t help older adults and their families understand the impact of surgery in terms people can understand, even though older patients face a higher risk of complications after surgery. Nor do they routinely engage in shared decision-making, which involves finding out what’s most important to patients and discussing surgery’s potential effect on their lives before setting a course for treatment. Older patients, it turns out, often have different priorities than younger ones. ‘More than longevity, in many cases, they value their ability to live independently and spend quality time with loved ones,’ according to Dr. Clifford Ko, professor of surgery at UCLA’s David Geffen School of Medicine. Adds Dr. Ronnie Rosenthal, a professor of surgery and geriatrics at Yale School of Medicine (and co-leader of the Coalition for Quality in Geriatric Surgery Project): ‘Generally, surgeons explain to an older patient the physical problem, how surgery is meant to correct it and what complications are possible, backed by references to scientific studies. ‘What we don’t ask is: What does living well mean to you? What do you hope to be able to do in the next year? And what should I know about you to provide good care?’ At the University of Wisconsin-Madison, Dr. Margaret Schwarze, an associate professor of vascular surgery, has developed a tool called ‘best case/worst case’ to help surgeons communicate more effectively with older patients. ‘The idea is to tell the patient a story in terms they can understand,’ Schwarze said. ‘Going through a major operation when you’re older is going to change your life. Our goal is to help older patients imagine what these changes might look like.’”

The Decision to Operate or Not: A Surgeon Seeks Equanimity

For neurosurgeon Joseph D. Stern, a go-no go surgery decision can be a source of great moral distress. “The choice to operate or not to operate often generates moral distress in the doctor who makes it,” he writes in The New York Times. “All too often, patients arrive by ambulance alone or families face these moments in crisis, contemplating death or disability in their family member as if for the first time. I go with my gut when deciding whether or not to operate, but always, in the back of my mind, the circumstances stir up doubt. What if I’m wrong? Is it in the patient’s best interest to put him through surgery if the chance of meaningful recovery is vanishingly small? Yet, not taking this chance guarantees his death. The choice is laced with conflict and we make it on our own, often under intense time pressure because of the emergent nature of the crisis. In one case involving a patient facing a second brain operation to deal with a complication arising from the first, it was difficult to predict the outcome. I called and spoke to my patient’s daughter and son-in-law. Later, we all spoke with his wife. I explained that my patient had not improved much since his surgery and that, while we could remove the blood again, I was uncertain about whether he would regain independence. I had serious reservations about his future quality of life. His daughter told me that her father would not want this. He was fiercely independent and had also become the caregiver for his wife; she knew that her mother would not be able to manage the situation. We moved from this to discuss palliative and hospice care. Later, I consulted with the hospital’s palliative care team, which stepped in and did a masterful job of arranging for his transfer to an inpatient hospice unit at a hospital closer to the family’s home. This outcome — my patient’s death — although not what we had hoped for, felt right to all of us. Only later did I realize that while I felt sadness, I no longer felt moral distress. That distress, which I felt acutely when I planned to take my patient back to surgery, had lifted. I moved from the disquiet of moral distress to a feeling of equanimity and to a sense of moral integrity.”

One Solution to Loneliness: ‘Chat Benches’

The physical and psychological impact of loneliness among the aging manifests itself in ever more distressing ways. As The Washington Post’s Cathy Free reports , “Detective Sgt. Ashley Jones with the Avon and Somerset Police in England was talking to an elderly widow who had been scammed. She would get a call each morning from a man pretending to be her friend, and he eventually convinced her to give him about $31,000. Jones was struck when she said she didn’t mind sending the con man money. ‘Otherwise, I would never speak to another person for weeks on end,’” he recalled her saying. Researchers are paying increasing attention to the scourge of loneliness, and various entities are endeavoring to come up with solutions. For Sgt. Jones, the response was both inspired and very low-tech. “Jones convinced the police department to let him designate a couple of ‘chat benches’ in two local parks. In mid-June, he hung colorful signs that said: the ‘Happy to Chat’ bench. Sit here if you don’t mind someone stopping to say hello’. A few days after the signs went up in local parks in Taunton and Burnham, Jones took a stroll by each one and saw people sitting there actually talking to each other. ‘Fantastically, this has begun to gain traction,’ said Jones, a 22-year veteran of the department. The ‘Happy to Chat’ sign helps break down the invisible wall between strangers who might be sitting side by side but are uncertain about starting a conversation. There are now more than 40 conversation benches scattered throughout the United Kingdom, and people in other countries, including Australia and the United States, have shown an interest in doing similar projects. Jones recently got a call from a real estate agent in Prineville, Oregon, who said she is having several chat benches custom built, with the goal of putting them in local parks.”

Maine’s Eldercare Shortage Foreshadows National Trend

The Washington Post’s Jeff Stein traveled to Dover-FoxCroft, Maine, to take a close look at how the dire shortage of home care aides is increasing the “disconnect between the state’s aging population and its need for young workers to care for that population. The disconnect is expected to be mirrored in states throughout the country over the coming decade, demographic experts say. And that’s especially true in states with populations with fewer immigrants, who are disproportionately represented in many occupations serving the elderly. ‘We have added an entire generation since we first put the safety net in place but with no plan whatsoever for how to support them,’ said Ai-jen Poo, co- director of Caring Across Generations, which advocates for long-term care. ‘As the oldest state, Maine is the tip of the spear — but it foreshadows what is to come for the entire country.’ Last year, Maine crossed a crucial aging milestone: A fifth of its population is older than 65, which meets the definition of ‘super-aged,’ according to the World Bank. By 2026, Maine will be joined by more than 15 other states, according to Fitch Ratings, including Vermont and New Hampshire, Maine’s neighbors in the Northeast; Montana; Delaware; West Virginia; Wisconsin; and Pennsylvania. More than a dozen more will meet that criterion by 2030.

“For now,” Stein continues, “muscular dystrophy patient Mark Honey’s challenges tell the tale. Living alone in the small town of Ellsworth, Maine, Honey, 63, has for about 18 months looked for a nursing home where he can receive 24-hour care. But with nursing homes across Maine closing at an unprecedented rate, Honey has been unsuccessful. Medicaid pays for a care aide to come to his home for 70 hours a week. But the state has told Honey it cannot find enough workers to cover the hours, even though he legally qualifies for the care. Honey said he lives in fear of one of the caretakers getting sick and quitting or finding another job. ‘When you’re confined to a bed, there’s not much you can work with. It only takes one or two of the girls being sick, or one of the two of them quitting, for me to not be covered. And then you’re up the creek without a paddle.’”

Home Health Aide Marjorie Salmon: 24-Hour Social Worker, Housekeeper, Warden, and More

From the macro level to the story of one home care aide and one patient, The New York Times’ Andy Newman takes readers into the harrowing and unforgettable toil of Marjorie Salmon’s 24-hour day. “Since mid-January, Marjorie has been Bob Dettmer’s round-the-clock caretaker. Bob is fogged in by Alzheimer’s and unsteady from Parkinson’s. Marjorie’s job is called home health aide, but the term does not begin to encompass her duties. She is social worker, housekeeper, behavioral-modification expert, dietitian, diaper changer, day planner, de facto case manager, warden and more. Marjorie agreed to do the job for a flat rate of $160 per day plus room and board. Her workday starts when Bob wakes up, or before, and finishes after he goes to sleep, and can stretch for 14 or 16 hours or more. She works 26 or 27 days out of the month. The pay is not much — at 16 hours a day, it would come to $10 an hour — but Bob’s family is deeply grateful, and that counts for a lot. ‘If I take a client and I have the respect,’ she said, ‘I will stay through to the end.’ Home health care is the fastest growing major job category in the country, one of the most emotionally and personally demanding, and one of the worst paid. But home care workers’ labor happens behind closed doors. The workers are mostly women of color, and about one-third are immigrants. As a result, many advocates say, their work is systemically devalued, dismissed as ‘domestic care’ and reimbursed at rock-bottom rates by state Medicaid programs. All day, Marjorie switches hats: good cop, bad cop, kindergarten teacher. ‘In this field,’ she says, ‘you have to use a lot of psychology. The worst thing I can do is fight with a sick person. The fire blazes, you have to be the extinguisher.’ With it all, many aides who stick with the job consider it a calling. ‘This job, it is total, it is total demand. Sometimes they don’t pay you what they should, but you know what, I don’t know what the end of my time is going to be like. I believe that what goes around comes around, and I believe in distributing love equally and fairly.’”

Submit Your Application Soon!

Family Caregiver Alliance in partnership with the Rosalinde and Arthur Gilbert Foundation, Helen Daniels Bader Fund, a Bader Philanthropy, announce the 2019 Innovations in Alzheimer’s Caregiving Legacy Awards .

Three $20,000 awards in the following categories:

► Creative Expression

► Diverse/Multicultural Communities

► Public Policy

Visit our information page for directions and the link to the online application. Previous applicants are encouraged to apply again. Please share this announcement with any nonprofit or public organizations who are potential candidates for an award.

DEADLINE: Friday, October 4, 2019, 5 p.m. (Pacific Time)

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

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