Tag: Aging

Biden Administration Sets Higher Staffing Mandates. Most Nursing Homes Don’t Meet Them.

The Biden administration finalized nursing home staffing rules Monday that will require thousands of them to hire more nurses and aides — while giving them years to do so.

The new rules from the Centers for Medicare & Medicaid Services are the most substantial changes to federal oversight of the nation’s roughly 15,000 nursing homes in more than three decades. But they are less stringent than what patient advocates said was needed to provide high-quality care.

Spurred by disproportionate deaths from covid-19 in long-term care facilities, the rules aim to address perennially sparse staffing that can be a root cause of missed diagnoses, severe bedsores, and frequent falls.

“For residents, this will mean more staff, which means fewer ER visits potentially, more independence,” Vice President Kamala Harris said while meeting with nursing home workers in La Crosse, Wisconsin. “For families, it’s going to mean peace of mind in terms of your loved one being taken care of.”

When the regulations are fully enacted, 4 in 5 homes will need to augment their payrolls, CMS estimated. But the new standards are likely to require slight if any improvements for many of the 1.2 million residents in facilities that are already quite close to or meet the minimum levels.

“Historically, this is a big deal, and we’re glad we have now established a floor,” Blanca Castro, California’s long-term care ombudsman, said in an interview. “From here we can go upward, recognizing there will be a lot of complaints about where we are going to get more people to fill these positions.”

The rules primarily address staffing levels for three types of nursing home workers. Registered nurses, or RNs, are the most skilled and responsible for guiding overall care and setting treatment plans. Licensed practical nurses, sometimes called licensed vocational nurses, work under the direction of RNs and perform routine medical care such as taking vital signs. Certified nursing assistants are supposed to be the most plentiful and help residents with daily activities like going to the bathroom, getting dressed, and eating.

While the industry has increased wages by 27% since February 2020, homes say they are still struggling to compete against better-paying work for nurses at hospitals and at retail shops and restaurants for aides. On average, nursing home RNs earn $40 an hour, licensed practical nurses make $31 an hour, and nursing assistants are paid $19 an hour, according to the most recent data from the Bureau of Labor Statistics.

CMS estimated the rules will ultimately cost $6 billion annually, but the plan omits any more payments from Medicare or Medicaid, the public insurers that cover most residents’ stays — meaning additional wages would have to come out of owners’ pockets or existing facility budgets.

The American Health Care Association, which represents the nursing home industry, called the regulation “an unreasonable standard” that “creates an impossible task for providers” amid a persistent worker shortage nationwide.

“This unfunded mandate doesn’t magically solve the nursing crisis,” the association’s CEO, Mark Parkinson, said in a statement. Parkinson said the industry will keep pressing Congress to overturn the regulation.

Richard Mollot, executive director of the Long Term Care Community Coalition, a New York City-based advocacy nonprofit, said “it is hard to call this a win for nursing home residents and families” given that the minimum levels were below what studies have found to be ideal.

The plan was welcomed by labor unions that represent nurses — and whom President Joe Biden is counting on for support in his reelection campaign. Service Employees International Union President Mary Kay Henry called it a “long-overdue sea change.” This political bond was underscored by the administration’s decision to have Harris announce the rule with SEIU members in Wisconsin, a swing state.

The new rules supplant the vague federal mandate that has been in place since the 1980s requiring nursing homes to have “sufficient” staffing to meet residents’ needs. In practice, inspectors rarely categorized inadequate staffing as a serious infraction resulting in possible penalties, federal records show.

Starting in two years, most homes must provide an average of at least 3.48 hours of daily care per resident. Homes won’t be required to give that level of attention to every resident, or every day; regulators will judge the average for the whole facility over several months. About 6 in 10 nursing homes are already operating at that level, a KFF analysis found.

The rules give homes breathing room before they must comply with more specific requirements. Within three years, most nursing homes will need to provide daily RN care of at least 0.55 hours per resident and 2.45 hours from aides.

CMS also mandated that within two years an RN must be on duty at all times in case of a patient crisis on weekends or overnight. Currently, CMS requires at least eight consecutive hours of RN presence each day and a licensed nurse of any level on duty around the clock. An inspector general report found that nearly a thousand nursing homes didn’t meet those basic requirements.

Nursing homes in rural areas will have longer to staff up. Within three years, they must meet the overall staffing numbers and the round-the-clock RN requirement. CMS’ rule said rural homes have four years to achieve the RN and nurse aide thresholds, although there was some confusion within CMS, as its press materials said rural homes would have five years.

Under the new rules, the average nursing home, which has around 100 residents, would need to have at least two RNs working each day, and at least 10 or 11 nurse aides, the administration said. Homes could meet the overall requirements through two more workers, who could be RNs, vocational nurses, or aides.

Homes can get a hardship exemption from the minimums if they are in regions with low populations of nurses or aides and demonstrate good-faith efforts to recruit.

Democrats praised the rules, though some said the administration did not go nearly far enough. Rep. Lloyd Doggett (D-Texas), the ranking member of the House Ways and Means Health Subcommittee, said the changes were “modest improvements” but that “much more is needed to ensure sufficient care and resident safety.” A Republican senator from Nebraska, Deb Fischer, said the rule would “devastate nursing homes across the country and worsen the staffing shortages we are already facing.”

Advocates for nursing home residents have been pressing CMS for years to adopt a higher standard than what it ultimately settled on. A CMS-commissioned study in 2001 found that the quality of care improved with increases of staff up to a level of 4.1 hours per resident per day — nearly a fifth higher than what CMS will require. The consultants CMS hired in preparing its new rules did not incorporate the earlier findings in their evaluation of options.

CMS said the levels it endorsed were more financially feasible for homes, but that assertion didn’t quiet the ongoing battle about how many people are willing to work in homes at current wages and how financially strained homes owners actually are.

“If states do not increase Medicaid payments to nursing homes, facilities are going to close,” said John Bowblis, an economics professor and research fellow with the Scripps Gerontology Center at Miami University. “There aren’t enough workers and there are shortages everywhere. When you have a 3% to 4% unemployment rate, where are you going to get people to work in nursing homes?”

Researchers, however, have been skeptical that all nursing homes are as broke as the industry claims or as their books show. A study published in March by the National Bureau of Economic Research estimated that 63% of profits were secretly siphoned to owners through inflated rents and other fees paid to other companies owned by the nursing homes’ investors.

Charlene Harrington, a professor emeritus at the nursing school of the University of California-San Francisco, said: “In their unchecked quest for profits, the nursing home industry has created its own problems by not paying adequate wages and benefits and setting heavy nursing workloads that cause neglect and harm to residents and create an unsatisfactory and stressful work environment.”

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Dementia Care Programs Help, If Caregivers Can Find Them

There’s no cure, yet, for Alzheimer’s disease. But dozens of programs developed in the past 20 years can improve the lives of both people living with dementia and their caregivers.

Unlike support groups, these programs teach caregivers concrete skills such as how to cope with stress, make home environments safe, communicate effectively with someone who’s confused, or solve problems that arise as this devastating illness progresses.

Some of these programs, known as “comprehensive dementia care,” also employ coaches or navigators who help assess patients’ and caregivers’ needs, develop individualized care plans, connect families to community resources, coordinate medical and social services, and offer ongoing practical and emotional support.

Unfortunately, despite a significant body of research documenting their effectiveness, these programs aren’t broadly available or widely known. Only a small fraction of families coping with dementia participate, even in the face of pervasive unmet care needs. And funding is scant, compared with the amount of money that has flooded into the decades-long, headline-grabbing quest for pharmaceutical therapies.

“It’s distressing that the public conversation about dementia is dominated by drug development, as if all that’s needed were a magic pill,” said Laura Gitlin, a prominent dementia researcher and dean of the College of Nursing and Health Professions at Drexel University in Philadelphia.

“We need a much more comprehensive approach that recognizes the prolonged, degenerative nature of this illness and the fact that dementia is a family affair,” she said.

In the U.S., more than 11 million unpaid and largely untrained family members and friends provide more than 80% of care to people with dementia, supplying assistance worth $272 billion in 2021, according to the Alzheimer’s Association. (This excludes patients living in nursing homes and other institutions.) Research shows these “informal” caretakers devote longer hours to tending to those with dementia and have a higher burden of psychological and physical distress than other caregivers.

Despite those contributions, Medicare expected to spend $146 billion on people with Alzheimer’s disease or other types of dementia in 2022, while Medicaid, which pays for nursing home care for people with low incomes or disabilities, expected to spend about $61 billion.

One might think such enormous spending ensures high-quality medical care and adequate support services. But quite the opposite is true. Medical care for people with Alzheimer’s and other types of dementia in the U.S. — an estimated 7.2 million individuals, most of them seniors — is widely acknowledged to be fragmented, incomplete, poorly coordinated, and insensitive to the essential role that family caregivers play. And support services are few and far between.

“What we offer people, for the most part, is entirely inadequate,” said Carolyn Clevenger, associate dean for transformative clinical practice at Emory University’s Nell Hodgson Woodruff School of Nursing.

Clevenger helped create the Integrated Memory Care program at Emory, a primary care practice run by nurse practitioners with expertise in dementia. Like other comprehensive care programs, they pay considerable attention to caregivers’ as well as patients’ needs. “We spent a great deal of time answering all kinds of questions and coaching,” she told me. This year, Clevenger said, she hopes three additional sites will open across the country.

Expansion is a goal shared by other comprehensive care programs at UCLA (the Alzheimer’s and Dementia Care Program, now available at 18 sites), Eskenazi Health in Indianapolis, the University of California-San Francisco (Care Ecosystem, 26 sites), Johns Hopkins University (Maximizing Independence at Home), and the Benjamin Rose Institute on Aging in Cleveland (BRI Care Consultation, 35 sites).

Over the past decade, a growing body of research has shown these programs improve the quality of life for people with dementia; alleviate troublesome symptoms; help avoid unnecessary emergency room visits or hospitalizations; and delay nursing home placement, while also reducing depression symptoms, physical and emotional strain, and overall stress for caregivers.

In an important development in 2021, an expert panel organized by the National Academies of Sciences, Engineering, and Medicine said there was sufficient evidence of benefit to recommend that comprehensive dementia care programs be broadly implemented.

Now, leaders of these programs and dementia advocates are lobbying Medicare to launch a pilot project to test a new model to pay for comprehensive dementia care. They have been meeting with staff at the Center for Medicare and Medicaid Innovation and “CMMI has expressed a considerable amount of interest in this,” according to Dr. David Reuben, chief of geriatric medicine at UCLA and a leader of its dementia care program.

“I’m very optimistic that something will happen” later this year, said Dr. Malaz Boustani, a professor at Indiana University who helped develop Eskenazi Health’s Aging Brain Care program and who has been part of the discussions with the Centers for Medicare & Medicaid Services.

The Alzheimer’s Association also advocates for a pilot project of this kind, which could be adopted “Medicare-wide” if it’s shown to beneficial and cost-effective, said Matthew Baumgart, the association’s vice president of health policy. Under a model proposed by the association, comprehensive dementia care programs would receive between $175 and $225 per month for each patient in addition to what Medicare pays for other types of care.

A study commissioned by the association estimates that implementing a comprehensive care dementia model could save Medicare and Medicaid $21 billion over 10 years, largely by reducing patients’ use of intensive health care services.

Several challenges await, even if Medicare experiments with ways to support comprehensive dementia care. There aren’t enough health care professionals trained in dementia care, especially in rural areas and low-income urban areas. Moving programs into clinical settings, including primary care practices and medical clinics, may be challenging given the extent of dementia patients’ needs. And training needs for program staff members are significant.

Even if families receive some assistance, they may not be able to afford necessary help in the home or other services such as adult day care. And many families coping with dementia may remain at a loss to find help.

To address that, the Benjamin Rose Institute on Aging later this year plans to publish an online consumer directory of evidence-based programs for dementia caregivers. For the first time, people will be able to search, by ZIP code, for assistance available near them. “We want to get the word out to caregivers that help is available,” said David Bass, a senior vice president at the Benjamin Rose Institute who’s leading that effort.

Generally, programs for dementia caregivers are financed by grants or government funding and free to families. Often, they’re available through Area Agencies on Aging — organizations that families should consult if they’re looking for help. Some examples:

  • Savvy Caregiver, delivered over six weeks to small groups in person or over Zoom. Each week, a group leader (often a social worker) gives a mini-lecture, discusses useful strategies, and guides group members through exercises designed to help them manage issues associated with dementia. Now offered in 20 states, Savvy Caregiver recently introduced an online, seven-session version of the program that caregivers can follow on their schedule.
  • REACH Community, a streamlined version of a program recommended in the 2021 National Academy of Sciences report. In four hour-long sessions in person or over the phone, a coach teaches caregivers about dementia, problem-solving strategies, and managing symptoms, moods, stress, and safety. A similar program, REACH VA, is available across the country through the Department of Veterans Affairs.
  • Tailored Activity Program. In up to eight in-home sessions over four months, an occupational therapist assesses the interests, functional abilities, and home environment of a person living with dementia. Activities that can keep the individual meaningfully engaged are suggested, along with advice on how to carry them out and tips for simplifying the activities as dementia progresses. The program is being rolled out across health care settings in Australia and is being reviewed as a possible component of geriatric home-based care by the VA, Gitlin said.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

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Readers and Tweeters Urgently Plea for a Proper ‘Role’ Call in the ER

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.

How Physician Assistants and Nurse Practitioners Enhance Health Care

The story of one patient’s ER experience does not at all capture the complexities of an emergency department serving the needs of a stochastic patient population.

Given the reach of KHN, it is disappointing to read stories that inch closer to tabloid-level reporting (“Doctors Are Disappearing From Emergency Rooms as Hospitals Look to Cut Costs,” Feb. 13).

Having spent most of my career working in and operationalizing emergency departments, I can assure you that there are plenty of opportunities to optimize the delivery of care and reduce unnecessary waste and cost while maintaining excellent outcomes. The salient point that you make “it’s all about the money” is too simplistic given the complexities.

Advanced practice providers (APPs) collectively describe nurse practitioners (NPs), physician assistants (PAs), certified registered nurse anesthetists (CRNAs), and certified nurse midwives (CNMs). The term “midlevel practitioner” is outdated.

The archaic paternalistic approach to health care has long been overdue for change. Post-pandemic, it is critical to pivot from “the way it has always been done,” and that includes embracing new models of care.

Physicians and APPs provide excellent care to their patients and operate with different scopes of practice, training, and licensure. Therefore, most of us find working together in team-based models to be highly effective in ensuring that patients see the right care provider for the right health problem.

I found this reporting to be superficial and even offensive to nurse practitioners, like myself, who provide just as high quality care to patients as our physician colleagues.

I welcome the opportunity for dialogue about the value of nurse practitioners and physician assistants.

— Cindi Warburton, Spokane, Washington

— Mark Williams, Sacramento, California

I heard your NPR-partnered story on emergency rooms being managed by private equity and using fewer doctors and more nurse practitioners and physician assistants as midlevel practitioners.

But I prefer midlevel practitioners and medical residents, if their skills are relevant to me. They tend to be more careful in telling me what I should know and in entering records.

The professionally senior doctors (by years of experience and specialty, but I don’t know about board certification) tend to use record-keeping to support higher insurance reimbursement and then they don’t seem to believe what anyone else writes in the records, or don’t bother looking. Furthermore, they’re less likely to tell me what circumstances should prompt me to seek out a doctor or an ER, but if anything goes so wrong or becomes so advanced that I need even more care, they’re happy to provide it.

Doctors often categorically object to nurse practitioners, and state regulations reflect that.

— Nick Levinson, Brooklyn, New York

The recent KHN article “Doctors Are Disappearing From Emergency Rooms as Hospitals Look to Cut Costs” failed to address a critical consideration in the complexities of health care delivery today: the challenge of providing care to patients when they need it at a time when demand for care is on the rise, and the health care workforce is experiencing staggering levels of decline.

Today, 99 million Americans lack adequate access to primary care. By 2026, there will be a shortage of up to 3.2 million health care workers. As a physician associate/physician assistant for more than 20 years, I am kept up at night because of this perfect storm on the horizon — worried for my patients and their ability to access the care they need. Timely access to a trusted and qualified health care provider is never more pressing than during an emergency, when patients are at their most vulnerable, and delay in care can be a matter of life or death.

There is no easy answer to this impending workforce crisis, but one thing is clear: We can meet patient needs only if every member of today’s health care team is respected for the contributions they bring and can practice to the fullest extent of their education and training.

The fact is, without PAs, patients’ access to care would suffer. PAs account for more than 500 million patient visits each year. For many patients, PAs serve as primary care providers. And in some communities, PAs are the only health care providers. Let’s not lose sight of the countless stories we have all read in the media about community hospitals and clinics closing.

This article failed to take into account any research that shows the value and quality of PA-delivered care. For example, a 2021 study published by PLOS ONE looked at 39 studies across North America, Europe, and Africa between 1977 and 2021. In 33 of the 39 studies, researchers found care provided by a PA was comparable or better than care delivered by a physician. In 74% of the studies, resource and labor costs were lower when care was delivered by a PA versus a physician.

The quality of PA-delivered care can also be seen when looking at the ratio of liability claims. The ratio of claims to PAs averaged one claim for every 550 PAs. Compare this to the physician ratio, which averaged 1 claim for every 80 physicians.

Hiring PAs to practice in emergency medicine is not about “replacing” physicians, nor does it diminish the quality of care. Utilizing PAs in emergency medicine is about equipping health care teams with a wide range of highly educated and trained clinicians who can work together to ensure patients get the safe, high-quality care they need.

Let us stay focused on the reason why PAs, nurse practitioners, and physicians went into medicine in the first place: to care for people! Patient-centered, team-based care is about every single one of us contributing our knowledge, experience, and expertise to ensure the best outcomes for patients.

— Jennifer M. Orozco, American Academy of Physician Associates president and board chair, Chicago

— Whitney Schmucker, New York City

KHN should not be using the term “midlevel providers.” It’s a derogatory term used by doctors to belittle advanced practice providers (nurse practitioners and physician associates).

— Danielle Franklin, Minneapolis

— Gregg Gonsalves, New Haven, Connecticut

Nurse practitioners are essential providers in our nation’s current and future health care system. In an effort to highlight concerns related to health facility ownership models, the recent article “Doctors Are Disappearing From Emergency Rooms as Hospitals Look to Cut Costs” incorrectly represents the care provided by NPs in emergency rooms.

In fact, a recent study examining advanced practice providers (APPs), including NPs, in the ER found increasing APP coverage had no impact on flow, safety, or patient experiences in the emergency department. Additional research concluded that after controlling for patient severity and complexity, APPs diagnostic testing and hospitalization rates did not differ from physicians in patients presenting to the emergency department with chest and abdominal pain.

Prepared at the master’s or doctoral level, NPs provide primary, acute, chronic, and specialty care to patients of all ages and backgrounds. NPs practice in nearly every health care setting including hospitals, clinics, Veterans Health Administration and Indian Health Service facilities, emergency rooms, urgent care sites, private physician or NP practices, skilled nursing facilities and nursing facilities, schools, colleges and universities, retail clinics, public health departments, nurse-managed clinics, homeless clinics, and home health care settings. Collectively, NPs deliver high-quality care in more than 1 billion patient visits each year.

Grounded in 50 years of research and evidence-based practice, NPs deliver high-quality care, consistent with their physician counterparts. Results from a study of over 800,000 patients at 530 Veterans Affairs facilities found that patients assigned to NP primary care providers were less likely to utilize additional services, had no difference in costs, and experienced similar chronic disease management compared with physician-assigned patients. Furthermore, a comprehensive summary of studies examining NP quality of care from the American Enterprise Institute underscores the benefits of NP-led care.

Today, NPs represent 355,000 solutions to our nation’s health care needs. Patients deserve access to these high-quality health care providers wherever they seek care.

— April N. Kapu, president of the American Association of Nurse Practitioners, Austin, Texas

— Dr. Sarabeth Broder-Fingert, Boston

Ophthalmologists and Optometrists Aren’t Interchangeable

Increasing Americans’ access to care is critical. However, loosening the scope of practice for certain types of care can be counterproductive and potentially risky for patients (“Montana Considers Allowing Physician Assistants to Practice Independently,” Feb.10).

A small handful of states, for example, have loosened scope-of-practice laws for laser eye surgery, which, if done incorrectly, could lead to serious complications that can damage a person’s vision. Over the course of their medical school education, internships, and residencies, ophthalmologists must complete thousands of hours of training before being allowed to perform laser eye surgeries on their own.

Unfortunately, some states permit optometrists, who are not medical doctors, to perform laser eye surgeries as long as they complete a 16- to 32-hour course. As one might expect, the likelihood of a patient needing additional surgery is significantly higher — more than double — when initial surgeries are performed by an optometrist instead of an ophthalmologist. It is little wonder, then, why states like California have successfully blocked efforts to loosen the scope of practice for laser eye surgery.

Despite the potential risks, and no evidence of documented access issues, the Department of Veterans Affairs updated its community care guidelines last year to allow optometrists in this small number of states to perform laser eye surgery on veterans in community care settings. Worse still, the VA is developing its National Standards of Practice, which many fear would let optometrists in VA facilities nationwide perform laser eye surgery on America’s veterans. To defend our veterans and prevent them from suffering adverse outcomes, it is critical for the VA to maintain patient protections that ensure only medical doctors with the requisite education and training can perform invasive eye surgeries.

Ophthalmologists and optometrists both play important roles in a patient’s collaborative care team, but their duties and skill sets are not interchangeable. Loosening the scope of practice for laser eye surgeries will not serve patients well. Our veterans defended us; now the VA must protect them.

— Dr. Daniel J. Briceland, president of the American Academy of Ophthalmology, Sun City West, Arizona

— David Johnson, Chicago

We were disappointed that the article by Keely Larson about Montana’s consideration of a change in physician assistant regulation failed to note that the vast majority of research on the quality of care provided by physician assistants and nurse practitioners demonstrates that they have similar quality of care to physicians when practicing in their area of expertise. There are numerous literature reviews published in peer-reviewed journals on this topic, which should have been noted in the story. The author selected a single working paper that focuses on quality of care in emergency departments in a single health system (the Department of Veterans Affairs) that is not representative of the settings in which most physician assistants and nurse practitioners work. The individual cited, Dr. Yiqun Chen, extrapolated her working paper to the entire profession of physician assistants (who were not included in her study), which is a significant overreach.

We are accustomed to KHN stories being well researched and balanced. This story missed the mark and does not reflect well on the quality KHN aims to achieve.

— Joanne Spetz, Janet Coffman, and Ulrike Muench, the University of California-San Francisco

— Dr. Mehmet Oz, Bryn Athyn, Pennsylvania

At the Crux of Nursing Home Staffing Crunch: Compensation

I doubt it is possible to staff nursing facilities with qualified and caring staff when the compensation is quite poor and the work environment is very challenging (“Wave of Rural Nursing Home Closures Grows Amid Staffing Crunch,” Jan. 25). It is more a system problem than a staffing problem and will not get “fixed” without some serious changes.

— Dr. Jack Page, Durham, North Carolina

— Benjy Renton, Washington, D.C.

Participating in the Mental Illness Stigma

I wonder what is behind the pressure to persuade us to say there is a stigma to mental health issues (“Public Health Agencies Turn to Locals to Extend Reach Into Immigrant Communities,” Feb. 10)? I wonder why we so easily comply?

— Harold A. Maio, retired mental health editor, Fort Myers, Florida

— Andrzej Klimczuk, Bialystok, Poland

Remote Fitness Must Not Replace the Value of Physical Therapy

If we’ve learned anything in recent years, it’s how vital technology is in allowing us to stay connected virtually, especially when it comes to health care. However, the online world cannot safely and adequately replace everything.

The recent article “Rural Seniors Benefit From Pandemic-Driven Remote Fitness Boom” (Jan.17) details how many older Americans living in rural areas rely on virtual fitness classes to remain physically active. While this is an important and effective option for some seniors, remote fitness classes cannot and should not replace clinically directed physical therapy.

Physical therapy helps patients remain strong and independent by managing pain, preventing injury, and improving mobility, flexibility, and balance under the supervision of a professionally trained physical therapist. It’s especially important at a time when senior deaths from falls are on the rise. Evidence shows that when seniors underwent an exercise intervention from a trained health care professional, it lowered their risk of a fall by 31%.

Not only is it effective in rehabilitating patients, but it is also an affordable, lower-cost alternative to invasive surgeries and pharmacological treatments, saving our health care system millions. And now, with the emergence of remote therapeutic monitoring, physical therapists can more easily reach patients in rural communities to ensure they are reaching their clinical goals through safe, at-home therapy exercises.

Physical therapists undergo years of education and training to provide the best, safest care for their patients. And while I applaud seniors for embracing online fitness classes and staying active, I also encourage them to recognize when clinically supervised physical therapy is needed to protect their safety and health.

— Nikesh Patel, executive director of the Alliance for Physical Therapy Quality and Innovation (APTQI), Washington, D.C.

— Eric Weinhandl, Victoria, Minnesota

Tallying Bad Pennies

“Did Your Health Plan Rip Off Medicare?” (Jan. 27) was a highly misleading article. On a per-enrollee per-year basis, over- and under-payments amounted to literally pennies. If you must pile on, focus on the few bad apples.

— Jon M. Kingsdale, Boston

— Inger Burnett-Zeigler, Chicago

How Much Did They Know and When Did They Know It?

Great story by Harris Meyer about Prentice and Lurie hospitals (“A Baby Spent 36 Days in an In-Network NICU. Why Did the Hospital Next Door Send a Bill?” Jan. 30). I was practicing as an anesthesiologist in Illinois in 2011 when the bill became law banning out-of-network balance billing for hospital-based docs. Of course we knew about the advent of the law: We had to enter into contracts to be in network, contracts that materially reduced all our doctors’ incomes!

It is impossible for me to believe that a professional operating a billing service in 2020 for Ann & Robert H. Lurie Children’s Hospital of Chicago didn’t know about this 2011 law. I don’t believe them for a moment.

Thanks for the great article.

— Ron Meyer, Wilmette, Illinois

— Regina Phelps, San Francisco

Leaving a Bad Taste in My Mouth

In every article I’ve read about Paxlovid, including yours (“What Older Americans Need to Know About Taking Paxlovid,” Dec. 18), not one mentions the horrible metallic taste these pills have. I was prescribed Paxlovid after contracting covid-19. I’m 71 years old. It’s beyond my reasoning that in this day and age a pharmaceutical manufacturer can’t put a neutral coating on the pills. This awful taste stays with you day and night for the five days of use. I even had a friend who had to stop taking them as she was losing sleep over the horrible taste. My reference to friends is: “It’s like sucking on a wrench.” I’m sure this issue isn’t confined to us seniors, but it would be nice to read some recognition of a problem with this medication.

By the way, my workaround, which definitely helps but is hardly a solution, is to swallow the pills down with a swig of cranberry juice.

— Don Dugan, Brookfield, Wisconsin

— Olav Mitchell Underdal, Irvine, California

Admiration for Abortion Doulas

I admire and respect individuals willing to provide aid and comfort to others who are going through either the traditional birth process or a hard decision to end a pregnancy (“In North Carolina, More People Are Training to Support Patients Through an Abortion,” Jan. 5). Kudos to news groups for increasing awareness of individuals and organizations providing valuable services for their fellow citizens.

— Michael Walker, Black Mountain, North Carolina

— Dr. Darrell Gray II, Owings Mills, Maryland

Thinking Outside the Traditional Medicine Box

Katheryn Houghton missed out on sharing info on traditional methods, especially acupuncture (“Why People Who Experience Severe Nausea During Pregnancy Often Go Untreated,” Jan. 13). Also ginger, as in ginger tea, and peppermint. Peppermint oil (sniffed) or tea. I am an advocate for people with cancer.

— Ann Fonfa, founder of the Annie Appleseed Project, Delray Beach, Florida

— Catherine Arnst, New York City

A Cartoon Blooper?

The “Gender reveal?” political cartoon (Feb. 14) was confusing, unfunny, and inaccurate. How is this “political”? (It isn’t.) What makes gender reveals funny? (They’re not.) Most importantly, such reveals — an anachronistic cultural tradition that should be done away with anyway — are “sex reveals,” not “gender reveals.” (Biology is based on anatomy at birth, while gender is self-determined later in life and is fluid over time.) Even sex reveals are problematic, as they assume two biological sexes. (Some estimates indicate nearly 2% of individuals are born intersex, with their sexual anatomy not fitting into categories of either female or male.)

With anti-trans and anti-drag queen legislation being proposed and codified seemingly daily, now is not the time to poke fun at, nor inaccurately represent, the construct of gender. (It’s never the time.)

— Steff Du Bois, licensed clinical psychologist, Chicago

Keeping Marijuana Candy Away From Children

As an emergency room doctor, I was disappointed by the recent “KHN Health Minute” story trivializing a growing public health risk by suggesting parents “lock up their marijuana gummies” to avoid poisoning their children (“Listen to the Latest ‘KHN Health Minute,’” Feb. 16).

For background on why I, and other doctors, are concerned, I encourage you to read “Marijuana Candy: Poisoning and Lack of Protection for Children.”

— Dr. Roneet Lev, San Diego

— Halee Fischer-Wright, Denver

A Suggestion for Extra-Credit Reading

In response to the recent “What the Health?” podcast episode “As US Bumps Against Debt Ceiling, Medicare Becomes a Bargaining Chip” (Jan. 19), please have Julie Rovner read Stephanie Kelton’s book “The Deficit Myth.” She needs to understand why taxes pay for nothing. I consider Kelton’s book the most important on economics and how government budgets and financing work in the modern world.

— Mark Schaffer, Las Vegas

— Iqbal Atcha, Hanover Park, Illinois

Investing in ‘Practice-Ready’ Nurses to Bolster Workforce

The Connecticut Center for Nursing Workforce Inc. has created a best-practice plan to address these issues (“Senators Say Health Worker Shortages Ripe for Bipartisan Compromise,” Feb. 17). As nursing is the largest health care workforce role and a critical infrastructure within the state, nurses are a significant contributor to the fiscal, physical, and mental health of Connecticut, and a profession that can provide economic stability to its workers and families. Over 10,000 qualified nursing students were denied admission to registered nursing programs in 2021 due to full-time and part-time faculty shortages, lack of student clinical placements, and capacity of capstone experiences in specialty areas.

To produce “practice-ready” nurses, investment needs to be made in increasing the number of nursing faculty lines, both full-time (classroom) and part-time (clinical) experiences, simulation capacity and expertise, operations staff, and transition to practice resources.

Today, this is more challenging than ever, due to the impact of covid-19 on our nursing workforce, the natural attrition of our older nurses, early departure of new nurses causing a severe nursing shortage in the state, and the cost of “travel” nurses that is crippling the budgets of our health care facilities and not sustainable over the long term.

Nursing schools are competing for the same nursing human capital as our practice settings yet offer 30% less compensation for faculty roles as compared to clinical practice roles.

As a solution, it is critical to:

  1. Engage nursing schools to identify the demand for full-time and part-time faculty lines and staff.
  2. Develop a nurse faculty marketing campaign for associate, baccalaureate, accelerated registered nurse programs, and master’s degree in nursing programs for both full-time and part-time roles.
  3. Capitalize on the expertise of clinical nurses for the role of part-time clinical nurse faculty.
  4. Engage health care facilities to determine current nurse vacancies, future staffing needs, and onboarding/“transition to practice” gaps to best inform educational institutions as to the programs needed to be continued, expanded, or dissolved; thereby, maximizing education capacity, resources, faculty, and staff.

— Marcia Proto, executive director for the Connecticut Center for Nursing Workforce Inc., North Haven, Connecticut

— RJ Connelly III, Pawtucket, Rhode Island

Missing Pieces in the Covid Data Puzzle

It is misinformation to state that covid-19 deaths were counted when the opposite was true, and deaths were underreported due to political reasons, and reasons of expediency (“FDA Experts Are Still Puzzled Over Who Should Get Which Covid Shots and When,”) Jan. 27. For example, my father-in-law tested positive for covid before entering the hospital, and then repeatedly tested positive for covid while in the hospital so that he could not be released, and he died in the hospital, and covid was not listed as a cause of death on his death certificate. I have reason to believe that my own father died of covid in May 2020, during an election year, and covid was not listed as a cause of death on his death certificate. These men were not merely statistics, but left behind families who are still in turmoil and grief.

In public, people should wear masks all the time regardless of vaccination status, but, at the same time, be updated on vaccinations and boosters, and, at the same time, socially distance, and, at the same time, wash hands frequently and thoroughly. While all these measures should be taken simultaneously, everyone wearing masks is the easiest way to monitor compliance, and eliminates problems in determining someone else’s vaccination status, or determining whether the efficacy of their vaccines may have waned, or in determining whether they tested positive for covid, and failed to quarantine.

When, previously, the science was that vaccines and booster efficacy waned after three to six months, it should not be touted now to get the vaccine or booster only once a year.

The goal post should never have been moved to merely keeping people out of the hospital, but the goal should be to prevent people contracting covid, and to eradicate this scourge once and for all.

— Edward H. Bonacci Jr., Apex, North Carolina

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A Health-Heavy State of the Union

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Health care was a recurring theme throughout President Joe Biden’s 2023 State of the Union address on Capitol Hill this week. He took a victory lap on recent accomplishments like capping prescription drug costs for seniors on Medicare. He urged Congress to do more, including making permanent the boosted insurance premium subsidies added to the Affordable Care Act during the pandemic. And he sparred with Republicans in the audience — who jeered and called him a liar — over GOP proposals that would cut Medicare and Social Security.

Meanwhile, abortion rights advocates and opponents are anxiously awaiting a federal court decision out of Texas that could result in a nationwide ban on mifepristone, one of two drugs used in medication abortion.

This week’s panelists are Julie Rovner of KHN, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat, and Sarah Karlin-Smith of the Pink Sheet.

Among the takeaways from this week’s episode:

  • President Joe Biden’s State of the Union address emphasized recent victories against high health care costs, like Medicare coverage caps on insulin and out-of-pocket caps on prescription drug spending. Biden’s lively, informal exchange with lawmakers over potential cuts to Medicare and Social Security seemed to steal the show, though the political fight over cutting costs in those entitlement programs is rooted in a key question: What constitutes a “cut”?
  • Biden’s calls for bipartisanship to extend health programs like pandemic-era subsidies for Affordable Care Act health plans are expected to clash with conservative demands to slash federal government spending. And last year’s Senate fights demonstrate that sometimes the opposition comes from within the Democratic Party.
  • While some abortion advocates praised Biden for vowing to veto a federal abortion ban, others felt he did not talk enough about the looming challenges to abortion access in the courts. A decision is expected soon in a Texas court case challenging the future use of mifepristone. The Trump-appointed judge’s decision could ban the drug nationwide, meaning it would be barred even in states where abortion continues to be legal.
  • The FDA is at the center of the abortion pill case, which challenges its approval of the drug decades ago and could set a precedent for legal challenges to the approval of other drugs. In other FDA news, the agency recently changed policy to allow gay men to donate blood; announced new food safety leadership in response to the baby formula crisis; and kicked back to Congress a question of how to regulate CBD, or cannabidiol, products.
  • In drug pricing, the top-selling pharmaceutical, Humira, will soon reach the end of its patent, which will offer a telling look at how competition influences the price of biosimilars — and the problems that remain for lawmakers to resolve.

Also this week, Rovner interviews Kate Baicker of the University of Chicago about a new paper providing a possible middle ground in the effort to establish universal health insurance coverage in the U.S.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:

Julie Rovner: The New York Times’ “Don’t Let Republican ‘Judge Shoppers’ Thwart the Will of Voters,” by Stephen I. Vladeck

Alice Miranda Ollstein: Politico’s “Mpox Is Simmering South of the Border, Threatening a Resurgence,” by Carmen Paun

Sarah Karlin-Smith: KHN’s “Decisions by CVS and Optum Panicked Thousands of Their Sickest Patients,” by Arthur Allen

Rachel Cohrs: ProPublica’s “UnitedHealthcare Tried to Deny Coverage to a Chronically Ill Patient. He Fought Back, Exposing the Insurer’s Inner Workings,” by David Armstrong, Patrick Rucker, and Maya Miller

Also mentioned in this week’s podcast:

To hear all our podcasts, click here.

And subscribe to KHN’s What the Health? on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.

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Sick Profit: Investigating Private Equity’s Stealthy Takeover of Health Care Across Cities and Specialties

Two-year-old Zion Gastelum died just days after dentists performed root canals and put crowns on six baby teeth at a clinic affiliated with a private equity firm.

His parents sued the Kool Smiles dental clinic in Yuma, Arizona, and its private equity investor, FFL Partners. They argued the procedures were done needlessly, in keeping with a corporate strategy to maximize profits by overtreating kids from lower-income families enrolled in Medicaid. Zion died after being diagnosed with “brain damage caused by a lack of oxygen,” according to the lawsuit.

Kool Smiles “overtreats, underperforms and overbills,” the family alleged in the suit, which was settled last year under confidential terms. FFL Partners and Kool Smiles had no comment but denied liability in court filings.

Private equity is rapidly moving to reshape health care in America, coming off a banner year in 2021, when the deep-pocketed firms plowed $206 billion into more than 1,400 health care acquisitions, according to industry tracker PitchBook.

Seeking quick returns, these investors are buying into eye care clinics, dental management chains, physician practices, hospices, pet care providers, and thousands of other companies that render medical care nearly from cradle to grave. Private equity-backed groups have even set up special “obstetric emergency departments” at some hospitals, which can charge expectant mothers hundreds of dollars extra for routine perinatal care.

As private equity extends its reach into health care, evidence is mounting that the penetration has led to higher prices and diminished quality of care, a KHN investigation has found. KHN found that companies owned or managed by private equity firms have agreed to pay fines of more than $500 million since 2014 to settle at least 34 lawsuits filed under the False Claims Act, a federal law that punishes false billing submissions to the federal government with fines. Most of the time, the private equity owners have avoided liability.

New research by the University of California-Berkeley has identified “hot spots” where private equity firms have quietly moved from having a small foothold to controlling more than two-thirds of the market for physician services such as anesthesiology and gastroenterology in 2021. And KHN found that in San Antonio, more than two dozen gastroenterology offices are controlled by a private equity-backed group that billed a patient $1,100 for her share of a colonoscopy charge — about three times what she paid in another state.

It’s not just prices that are drawing scrutiny.

Whistleblowers and injured patients are turning to the courts to press allegations of misconduct or other improper business dealings. The lawsuits allege that some private equity firms, or companies they invested in, have boosted the bottom line by violating federal false claims and anti-kickback laws or through other profit-boosting strategies that could harm patients.

“Their model is to deliver short-term financial goals and in order to do that you have to cut corners,” said Mary Inman, an attorney who represents whistleblowers.

Federal regulators, meanwhile, are almost blind to the incursion, since private equity typically acquires practices and hospitals below the regulatory radar. KHN found that more than 90% of private equity takeovers or investments fall below the $101 million threshold that triggers an antitrust review by the Federal Trade Commission and the U.S. Justice Department.

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Spurring Growth

Private equity firms pool money from investors, ranging from wealthy people to college endowments and pension funds. They use that money to buy into businesses they hope to flip at a sizable profit, usually within three to seven years, by making them more efficient and lucrative.

Private equity has poured nearly $1 trillion into nearly 8,000 health care transactions during the past decade, according to PitchBook.

Fund managers who back the deals often say they have the expertise to reduce waste and turn around inefficient, or moribund, businesses, and they tout their role in helping to finance new drugs and technologies expected to benefit patients in years to come.

Critics see a far less rosy picture. They argue that private equity’s playbook, while it may work in some industries, is ill suited for health care, when people’s lives are on the line.

In the health care sphere, private equity has tended to find legal ways to bill more for medical services: trimming services that don’t turn a profit, cutting staff, or employing personnel with less training to perform skilled jobs — actions that may put patients at risk, critics say.

KHN, in a series of articles published this year, has examined a range of private equity forays into health care, from its marketing of America’s top-selling emergency contraception pill to buying up whole chains of ophthalmology and gastroenterology practices and investing in the booming hospice care industry and even funeral homes.

These deals happened on top of well-publicized takeovers of hospital emergency room staffing firms that led to outrageous “surprise” medical bills for some patients, as well as the buying up of entire rural hospital systems.

“Their only goal is to make outsize profits,” said Laura Olson, a political science professor at Lehigh University and a critic of the industry.

Hot Spots

When it comes to acquisitions, private equity firms have similar appetites, according to a KHN analysis of 600 deals by the 25 firms that PitchBook says have most frequently invested in health care.

Eighteen of the firms have dental companies listed in their portfolios, and 16 list centers that offer treatment of cataracts, eye surgery, or other vision care, KHN found.

Fourteen have bought stakes in animal hospitals or pet care clinics, a market in which rapid consolidation led to a recent antitrust action by the FTC. The agency reportedly also is investigating whether U.S. Anesthesia Partners, which operates anesthesia practices in nine states, has grown too dominant in some areas.

Private equity has flocked to companies that treat autism, drug addiction, and other behavioral health conditions. The firms have made inroads into ancillary services such as diagnostic and urine-testing and software for managing billing and other aspects of medical practice.

Private equity has done so much buying that it now dominates several specialized medical services, such as anesthesiology and gastroenterology, in a few metropolitan areas, according to new research made available to KHN by the Nicholas C. Petris Center at UC-Berkeley.

Although private equity plays a role in just 14% of gastroenterology practices nationwide, it controls nearly three-quarters of the market in at least five metropolitan areas across five states, including Texas and North Carolina, according to the Petris Center research.

Similarly, anesthesiology practices tied to private equity hold 12% of the market nationwide but have swallowed up more than two-thirds of it in parts of five states, including the Orlando, Florida, area, according to the data.

These expansions can lead to higher prices for patients, said Yashaswini Singh, a researcher at the Bloomberg School of Public Health at Johns Hopkins University.

In a study of 578 physician practices in dermatology, ophthalmology, and gastroenterology published in JAMA Health Forum in September, Singh and her team tied private equity takeovers to an average increase of $71 per medical claim filed and a 9% increase in lengthy, more costly, patient visits.

Singh said in an interview that private equity may develop protocols that bring patients back to see physicians more often than in the past, which can drive up costs, or order more lucrative medical services, whether needed or not, that boost profits.

“There are more questions than answers,” Singh said. “It really is a black hole.”

Yashaswini Singh, a researcher at the Bloomberg School of Public Health at Johns Hopkins University, has found that private equity takeovers of physician practices lead to higher patient bills.(Hannah Norman / KHN)

Jean Hemphill, a Philadelphia health care attorney, said that in some cases private equity has merely taken advantage of the realities of operating a modern medical practice amid growing administrative costs.

Physicians sometimes sell practices to private equity firms because they promise to take over things like billing, regulatory compliance, and scheduling — allowing doctors to focus on practicing medicine. (The physicians also might reap a big payout.)

“You can’t do it on a scale like Marcus Welby used to do it,” Hemphill said, referring to an early 1970s television drama about a kindly family doctor who made house calls. “That’s what leads to larger groups,” she said. “It is a more efficient way to do it.”

But Laura Alexander, a former vice president of policy at the nonprofit American Antitrust Institute, which collaborated on the Petris Center research, said she is concerned about private equity’s growing dominance in some markets.

“We’re still at the stage of understanding the scope of the problem,” Alexander said. “One thing is clear: Much more transparency and scrutiny of these deals is needed.”

‘Revenue Maximization’

Private equity firms often bring a “hands-on” approach to management, taking steps such as placing their representatives on a company’s board of directors and influencing the hiring and firing of key staffers.

“Private equity exercises immense control over the operations of health care companies it buys an interest in,” said Jeanne Markey, a Philadelphia whistleblower attorney.

Markey represented physician assistant Michelle O’Connor in a 2015 whistleblower lawsuit filed against National Spine and Pain Centers and its private equity owner, Sentinel Capital Partners.

In just a year under private equity guidance, National Spine’s patient load quadrupled as it grew into one of the nation’s largest pain management chains, treating more than 160,000 people in about 40 offices across five East Coast states, according to the suit.

O’Connor, who worked at two National Spine clinics in Virginia, said the mega-growth strategy sprang from a “corporate culture in which money trumps the provision of appropriate patient care,” according to the suit.

She cited a “revenue maximization” policy that mandated medical staffers see at least 25 patients a day, up from 16 to 18 before the takeover.

The pain clinics also overcharged Medicare by billing up to $1,100 for “unnecessary and often worthless” back braces and charging up to $1,800 each for urine drug tests that were “medically unnecessary and often worthless,” according to the suit.

In April 2019, National Spine paid the Justice Department $3.3 million to settle the whistleblower’s civil case without admitting wrongdoing.

Sentinel Capital Partners, which by that time had sold the pain management chain to another private equity firm, paid no part of National Spine’s settlement, court records show. Sentinel Capital Partners had no comment.

In another whistleblower case, a South Florida pharmacy owned by RLH Equity Partners raked in what the lawsuit called an “extraordinarily high” profit on more than $68 million in painkilling and scar creams billed to the military health insurance plan Tricare.

The suit alleges that the pharmacy paid illegal kickbacks to telemarketers who drove the business. One doctor admitted prescribing the creams to scores of patients he had never seen, examined, or even spoken to, according to the suit.

RLH, based in Los Angeles, disputed the Justice Department’s claims. In 2019, RLH and the pharmacy paid a total of $21 million to settle the case. Neither admitted liability. RLH managing director Michel Glouchevitch told KHN that his company cooperated with the investigation and that “the individuals responsible for any problems have been terminated.”

In many fraud cases, however, private equity investors walk away scot-free because the companies they own pay the fines. Eileen O’Grady, a researcher at the nonprofit Private Equity Stakeholder Project, said government should require “added scrutiny” of private equity companies whose holdings run afoul of the law.

“Nothing like that exists,” she said.

President Joe Biden delivers the State of the Union address
President Joe Biden delivers the State of the Union address in March. On the eve of his speech, the White House released a statement that accused private equity of “buying up struggling nursing homes” and putting “profits before people.”(Saul Loeb/AFP/Bloomberg via Getty Images)

Questions About Quality

Whether private equity influences the quality of medical care is tough to discern.

Robert Homchick, a Seattle health care regulatory attorney, said private equity firms “vary tremendously” in how conscientiously they manage health care holdings, which makes generalizing about their performance difficult.

“Private equity has some bad actors, but so does the rest of the [health care] industry,” he said. “I think it’s wrong to paint them all with the same brush.”

But incipient research paints a disturbing picture, which took center stage earlier this year.

On the eve of President Joe Biden’s State of the Union speech in March, the White House released a statement that accused private equity of “buying up struggling nursing homes” and putting “profits before people.”

The covid-19 pandemic had highlighted the “tragic impact” of staffing cuts and other moneysaving tactics in nursing homes, the statement said.

More than 200,000 nursing home residents and staffers had died from covid in the previous two years, according to the White House, and research had linked private equity to inflated nursing costs and elevated patient death rates.

Some injured patients are turning to the courts in hopes of holding the firms accountable for what the patients view as lapses in care or policies that favor profits over patients.

Dozens of lawsuits link patient harm to the sale of Florida medical device maker Exactech to TPG Capital, a Texas private equity firm. TPG acquired the device company in February 2018 for about $737 million.

In August 2021, Exactech recalled its Optetrak knee replacement system, warning that a defect in packaging might cause the implant to loosen or fracture and cause “pain, bone loss or recurrent swelling.” In the lawsuits, more than three dozen patients accuse Exactech of covering up the defects for years, including, some suits say, when “full disclosure of the magnitude of the problem … might have negatively impacted” Exactech’s sale to TPG.

Linda White is suing Exactech and TPG, which she asserts is “directly involved” in the device company’s affairs.

White had Optetrak implants inserted into both her knees at a Galesburg, Illinois, hospital in June 2012. The right one failed and was replaced with a second Optetrak implant in July 2015, according to her lawsuit. That one also failed, and she had it removed and replaced with a different company’s device in January 2019.

The Exactech implant in White’s left knee had to be removed in May 2019, according to the suit, which is pending in Cook County Circuit Court in Illinois.

In a statement to KHN, Exactech said it conducted an “extensive investigation” when it received reports of “unexpected wear of our implants.”

Exactech said the problem dated to 2005 but was discovered only in July of last year. “Exactech disputes the allegations in these lawsuits and intends to vigorously defend itself,” the statement said. TPG declined to comment but has denied the allegations in court filings.

‘Invasive Procedures’

In the past, private equity business tactics have been linked to scandalously bad care at some dental clinics that treated children from low-income families.

In early 2008, a Washington, D.C., television station aired a shocking report about a local branch of the dental chain Small Smiles that included video of screaming children strapped to straightjacket-like “papoose boards” before being anesthetized to undergo needless operations like baby root canals.

Five years later, a U.S. Senate report cited the TV exposé in voicing alarm at the “corporate practice of dentistry in the Medicaid program.” The Senate report stressed that most dentists turned away kids enrolled in Medicaid because of low payments and posed the question: How could private equity make money providing that care when others could not?

“The answer is ‘volume,’” according to the report.

Small Smiles settled several whistleblower cases in 2010 by paying the government $24 million. At the time, it was providing “business management and administrative services” to 69 clinics nationwide, according to the Justice Department. It later declared bankruptcy.

But complaints that volume-driven dentistry mills have harmed disadvantaged children didn’t stop.

According to the 2018 lawsuit filed by his parents, Zion Gastelum was hooked up to an oxygen tank after questionable root canals and crowns “that was empty or not operating properly” and put under the watch of poorly trained staffers who didn’t recognize the blunder until it was too late.

Zion never regained consciousness and died four days later at Phoenix Children’s Hospital, the suit states. The cause of death was “undetermined,” according to the Maricopa County medical examiner’s office. An Arizona state dental board investigation later concluded that the toddler’s care fell below standards, according to the suit.

Less than a month after Zion’s death in December 2017, the dental management company Benevis LLC and its affiliated Kool Smiles clinics agreed to pay the Justice Department $24 million to settle False Claims Act lawsuits. The government alleged that the chain performed “medically unnecessary” dental services, including baby root canals, from January 2009 through December 2011.

In their lawsuit, Zion’s parents blamed his death on corporate billing policies that enforced “production quotas for invasive procedures such as root canals and crowns” and threatened to fire or discipline dental staff “for generating less than a set dollar amount per patient.”

Kool Smiles billed Medicaid $2,604 for Zion’s care, according to the suit. FFL Partners did not respond to requests for comment. In court filings, it denied liability, arguing it did not provide “any medical services that harmed the patient.”

Covering Tracks

Under a 1976 federal law called the Hart-Scott-Rodino Antitrust Improvements Act, deal-makers must report proposed mergers to the FTC and the Justice Department antitrust division for review. The intent is to block deals that stifle competition, which can lead to higher prices and lower-quality services.

But there’s a huge blind spot, which stymies government oversight of more than 90% of private equity investments in health care companies: The current threshold for reporting deals is $101 million.

KHN’s analysis of PitchBook data found that just 423 out of 7,839 private equity health care deals from 2012 through 2021 were known to have exceeded the current threshold.

In some deals, private equity takes a controlling interest in medical practices, and doctors work for the company. In other cases, notably in states whose laws prohibit corporate ownership of physician practices, the private equity firm handles a range of management duties.

Thomas Wollmann, a University of Chicago researcher, said antitrust authorities may not learn of consequential transactions “until long after they have been completed” and “it’s very hard to break them up after the fact.”

In August, the FTC took aim at what it called “a growing trend toward consolidation” by veterinary medicine chains.

The FTC ordered JAB Consumer Partners, a private equity firm based in Luxembourg, to divest from some clinics in the San Francisco Bay and Austin, Texas, areas as part of a proposed $1.1 billion takeover of a rival.

The FTC said the deal would eliminate “head-to-head” competition, “increasing the likelihood that customers are forced to pay higher prices or experience a degradation in quality of the relevant services.”

Under the order, JAB must obtain FTC approval before buying veterinary clinics within 25 miles of the sites it owns in Texas and California.

The FTC would not say how much market consolidation is too much or whether it plans to step up scrutiny of health care mergers and acquisitions.

“Every case is fact-specific,” Betsy Lordan, an FTC spokesperson, told KHN.

Lordan, who has since left the agency, said regulators are considering updates to regulations governing mergers and are reviewing about 1,900 responses to the January 2022 request for public comment. At least 300 of the comments were from doctors or other health care workers.

Few industry observers expect the concerns to abate; they might even increase.

Investors are flush with “dry powder,” industry parlance for money waiting to stoke a deal.

The Healthcare Private Equity Association, which boasts about 100 investment companies as members, says the firms have $3 trillion in assets and are pursuing a vision for “building the future of healthcare.”

That kind of talk alarms Cornell University professor Rosemary Batt, a longtime critic of private equity. She predicts that investors chasing outsize profits will achieve their goals by “sucking the wealth” out of more and more health care providers.

“They are constantly looking for new financial tricks and strategies,” Batt said.

KHN’s Megan Kalata contributed to this article.

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Pese al consejo de Katie Couric, médicos dicen que las ecografías de seno pueden no ser necesarias

Cuando Katie Couric compartió la noticia de su diagnóstico de cáncer de mama, la ex presentadora del programa Today de NBC dijo que veía este nuevo reto de salud como un momento para animar a la gente a hacerse pruebas de detección de cáncer. 

“Por favor, háganse su mamografía anual”, escribió en su página web el mes pasado. “Pero igual de importante, averigüen si necesitan pruebas adicionales”.

En el ensayo, Couric, de 65 años, explicaba que, como tiene senos densos, se hace una prueba de ultrasonido además de la mamografía todos los años para detectar el cáncer de seno. La ecografía mamaria, también llamada sonograma, utiliza ondas sonoras para tomar imágenes del tejido mamario.

A veces puede identificar tumores malignos que son difíciles de detectar en una mamografía en mujeres con pechos densos, que significa tener una alta proporción de tejido fibroso y glándulas, y menos tejido graso.

Couric, que se sometió a una colonoscopía en vivo en televisión después de que su primer esposo muriera de cáncer de colon, y que perdió a una hermana por cáncer de páncreas, lleva mucho tiempo abogando por mejores opciones de detección.

Expertos en cáncer de seno aplaudieron a Couric por llamar la atención sobre la densidad mamaria como factor de riesgo de cáncer. Pero no coinciden con su defensa de las pruebas complementarias.

“No tenemos pruebas de que la revisión auxiliar reduzca la mortalidad por cáncer de mama o mejore la calidad de vida”, dijo la doctora Carol Mangione, profesora de medicina y salud pública de UCLA que preside el Grupo de Trabajo de Servicios Preventivos de Estados Unidos, un grupo de expertos médicos que hace recomendaciones sobre servicios preventivos tras sopesar beneficios y daños.

Couric no respondió al pedido de comentarios.

Además de la mamografía anual, algunas mujeres con mamas densas se hacen una ecografía o una resonancia magnética para tratar de identificar las células cancerosas que no se detectan en la mamografía. En la mamografía, el tejido fibroso denso aparece de color blanco y hace más difícil ver un cáncer, que también se ve blanco. El tejido mamario graso, que aparece oscuro en la mamografía, no oculta los cánceres de mama.

Dado que la tomosíntesis digital de las mamas, o mamografía en 3D, está cada vez más extendida, un número creciente de mujeres se hace esta prueba de chequeo en lugar de la mamografía estándar en 2D.

La mamografía 3D reduce el número de falsos positivos y parece identificar más cánceres en algunas mujeres con mamas densas, aunque se desconoce el impacto en la mortalidad. 

El grupo de trabajo da una calificación de “I” a la ecografía para las mujeres con mamas densas cuyos resultados de la mamografía no indican ningún problema. Esto significa que la evidencia actual es insuficiente para evaluar si los beneficios superan los daños del examen adicional.

Uno de los principales efectos nocivos que preocupa a los investigadores son los falsos positivos.

Las imágenes complementarias en mujeres que no tienen un riesgo elevado de padecer cáncer de mama pueden identificar posibles puntos problemáticos, lo que puede dar lugar a pruebas de seguimiento, como biopsias, que son invasivas y suelen aumentar el temor de las pacientes al cáncer. Pero la investigación ha descubierto que muy a menudo estos resultados resultan ser falsas alarmas.

Si 1,000 mujeres con senos densos se someten a una ecografía tras una mamografía negativa, la ecografía identificará entre dos y tres cánceres, según los estudios. Pero las imágenes adicionales también identificarán hasta 117 problemas potenciales que llevan a visitas y pruebas de seguimiento, pero que finalmente se determinan como falsos positivos.

“Por un lado, queremos hacer todo lo posible para mejorar la detección”, dijo la doctora Sharon Mass, ginecóloga y obstetra en Morristown, New Jersey, y ex presidenta de la sección de New Jersey del Colegio Americano de Obstetras y Ginecólogos. “Pero, por otro lado, hay muchos costos y angustia emocional” asociados a los resultados falsos positivos.

El grupo profesional no recomienda la revisión suplementaria para las mujeres con senos densos que no tienen ningún factor de riesgo adicional de cáncer.

Muchos otros grupos profesionales tienen una posición similar.

“Recomendamos tener una conversación con un proveedor de atención médica, y que las pacientes entiendan si sus senos son densos”, dijo Mass. “Pero no recomendamos que todo el mundo se haga la prueba”.

En particular, para aproximadamente el 8% de las mujeres que tienen senos extremadamente densos, vale la pena tener una conversación con un médico sobre la detección adicional, dijo Mass.

Del mismo modo, para las mujeres con senos densos que tienen factores de riesgo adicionales para el cáncer de mama, como antecedentes familiares de la enfermedad o un historial personal de biopsias de mama para comprobar los cánceres sospechosos, la ecografía puede tener sentido, dijo.

Las mamas densas son relativamente comunes. En Estados Unidos, se calcula que el 43% de las mujeres mayores de 40 años tiene mamas consideradas densas o extremadamente densas. Además de dificultar la interpretación de las mamografías, las mujeres con mamas densas tienen hasta el doble de probabilidades de desarrollar cáncer de mama que las mujeres con senos de densidad media, según las investigaciones.

Estudios han demostrado que las mamografías reducen la mortalidad por cáncer de seno. Sin embargo, aunque parece intuitivo que un mayor número de pruebas mejore las probabilidades de vencer al cáncer, las investigaciones no han demostrado que las mujeres tengan menos probabilidades de morir de cáncer de mama si se hacen una ecografía o una resonancia magnética suplementaria tras un resultado negativo de la mamografía.

Treinta y ocho estados y el Distrito de Columbia tienen leyes que exigen que se notifique a las pacientes sobre la densidad mamaria después de una mamografía, aunque no todas ordenan que se informe a las mujeres sobre su propia situación. Algunos estados exigen que las aseguradoras cubran las pruebas complementarias.

En 2019, la Administración de Alimentos y Medicamentos (FDA) propuso que la información sobre la densidad mamaria se incorporara a las cartas que reciben las pacientes después de una mamografía. Esa regla aún no se ha concretado, pero la agencia indicó a los legisladores que espera emitirla a más tardar a principios de 2023.

Las pruebas de imagen complementarias pueden ser caras si el plan de salud no las cubre. Una ecografía puede costar $250, mientras que un MRI puede salir $1,084 si se paga del propio bolsillo, según la Brem Foundation to Defeat Breast Cancer.

La diputada Rosa DeLauro (demócrata de Connecticut) tuiteó que está trabajando en un proyecto de ley con Couric que cubriría los MRI  y las ecografías para las mujeres con mamas densas.

Algunos médicos recomiendan otras medidas que pueden ser más eficaces que las pruebas adicionales para las mujeres con senos densos que quieren reducir su riesgo de cáncer de mama.

“Si realmente quieres ayudarte a tí misma, pierde peso”, dijo la doctora Karla Kerlikowske, profesora de medicina y epidemiología/bioestadística de la Universidad de California-San Francisco, que ha desarrollado calculadoras para ayudar a las personas a evaluar su riesgo de cáncer de mama. “Modera su consumo de alcohol y evita la sustitución hormonal a largo plazo. Son cosas que puedes controlar”.

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KHN’s ‘What the Health?’: Biden Hits the Road to Sell Democrats’ Record

Can’t see the audio player? Click here to listen on Acast. You can also listen on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.

What do pandemic preparedness, mental health care services, and over-the-counter hearing aids have in common? They are all things President Joe Biden touted on the campaign trail this week as he tries to maintain Democrats’ majorities in Congress in the midterm elections Nov. 8.

Biden is also campaigning on his support for abortion, promising to sign a bill codifying abortion rights if Democrats retain control of the House and Senate. Recent polls, however, have shown abortion slipping as a top voting issue.

This week’s panelists are Julie Rovner of KHN, Sarah Karlin-Smith of the Pink Sheet, Sandhya Raman of CQ Roll Call, and Mary Agnes Carey of KHN.

Among the takeaways from this week’s episode:

  • Among initiatives recently highlighted by the White House is a plan to prepare for future pandemics and thwart any bioterror attacks. But the question is where that money would come from. Republicans in Congress already have balked at providing more money for public health funding for some covid-19 and monkeypox programs.
  • Powerful advocates in the Senate — Sens. Patty Murray (D-Wash.) and Sen. Richard Burr (R-N.C.) — have supported legislation to advance the national public health strategy, but there is very little time in this session to push such a package through. And Burr is retiring at the end of the year, so it’s not clear who on the Republican side of the aisle might be willing to take up the baton.
  • Although the abortion issue appeared to be helping Democrats’ midterm prospects after the Supreme Court overturned Roe v. Wade in June, some of that excitement may be receding as the economy and other issues move to the forefront of voters’ concerns. But there are few precedents in recent U.S. history to guide voters in evaluating the issue of abortion today or reacting to such a major, sudden change.
  • Even if the Democrats were to keep hold of the levers of power on Capitol Hill, they would have a tough time pushing through an abortion bill. No one expects the party to take control of 60 seats in the Senate — needed to overcome a filibuster – and Democrats might not have the votes to get rid of the filibuster, either. Nearly all Republicans are expected to oppose any such effort.
  • One obstacle to passing national legislation securing abortion rights is that over the half-century since deciding Roe, the Supreme Court has approved a variety of state laws that limit access, such as allowing parents to be notified if a teen were to seek an abortion. Many Democrats object to those restrictions and would want to exclude them from any new law, while other members of Congress would demand them.
  • Biden’s promise was designed to remind voters who care about this issue to come out to the polls in three weeks, but it was also a reminder to many progressives of the failure of the administration to prepare and have a strategy to protect abortion rights ready when the Supreme Court ruling came down.
  • Indiana Attorney General Todd Rokita is not backing down from his criticism of an Indianapolis doctor who performed an abortion on a 10-year-old Ohio girl who could not get the procedure there because of a strict new state law. The doctor has shown that she followed all Indiana procedures, but Rokita’s criticism continues to concern others who support abortion access. That chilling effect may well be part of Rokita’s strategy.
  • Pharmacists are also worried about their liability in states with strict abortion limits. Federal officials have announced a probe of CVS and Walgreens after complaints that they are not readily filling prescriptions for drugs that can be used for many medical indications but also could terminate an early pregnancy.
  • An advisory committee for the FDA this week recommended removing from the market a drug used to prevent preterm births. The drug, Makena, was first approved in 2011 through an accelerated pathway that requires the company to conduct follow-up studies assessing the drug’s efficacy. Those trials found that Makena didn’t help pregnancies progress to later gestational age or improve the health of the premature babies.
  • If the FDA accepts the committee’s recommendation, it would be a rare step. It would be only the second time that a drug approved on the accelerated pathway has been withdrawn over a sponsor’s objections.
  • This week also marked a milestone for people with mild to moderate hearing loss. Starting last Monday, the government approved over-the-counter sales of hearing aids. The move is expected to dramatically reduce the prices of the devices and open a potentially giant market of consumers now able to afford them.

Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read, too:

Julie Rovner: KHN and NPR’s “Kids’ Mental Health Care Leaves Parents in Debt and in the Shadows,” by Yuki Noguchi

Sarah Karlin-Smith: Scientific American’s “Some People Really Are Mosquito Magnets, and They’re Stuck That Way,” By Daniel Leonard

Sandhya Raman: Journal of the National Cancer Institute’s “Use of Straighteners and Other Hair Products and Incident Uterine Cancer,” by Che-Jung Chang, et al.

Mary Agnes Carey: KHN’s “Blind to Problems: How VA’s Electronic Record System Shuts Out Visually Impaired Patients,” by Darius Tahir

Also mentioned in this week’s episode:

KHN’s “Say What? Hearing Aids Available Over-the-Counter for as Low as $199, and Without a Prescription,” by Phil Galewitz

Politico’s “‘Michigan Could Become Texas’ — Voters See Stark Choice on Abortion Referendum” by Alice Miranda Ollstein

To hear all our podcasts, click here.

And subscribe to KHN’s What the Health? on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.

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Family Caregivers Find Support on #dementia TikTok

It all changed on a Saturday night in New York City in 2016. Jacquelyn Revere was 29 and headed out to attend a friend’s comedy show. She was on the subway when her phone rang. It was a friend of her mom’s, back in Los Angeles. That’s weird, Revere thought. She never calls.

“And while I was on the subway, my mom’s friend said, ‘Something is wrong with your mom,’” Revere said. “‘We don’t know what’s going on, but your mom got lost driving home. What should have been a 15-minute drive ended up taking two hours.’”

Revere flew to L.A. At her mom’s home in Inglewood, she found foreclosure notices, untreated termite damage on the porch, and expired food in the kitchen. Her mother, Lynn Hindmon, was a devout evangelical who worked for her church. A slim, regal self-declared “health nut,” Hindmon was now forgetting to pay bills and couldn’t remember whom she was talking to on the phone.

Revere did not know it then, but that tough time would lead her to find — and help build — a community of caregivers who support one another on social media. TikTok has been an especially helpful platform. Content with the hashtag “dementia” has racked up more than 4 billion views on TikTok, as younger generations, already accustomed to sharing their lives online, now find themselves caring for aging loved ones — often with little preparation and no idea how to do it. Over the past few years, Revere’s account, @MomofMyMom, has become wildly popular, with more than 650,000 followers. Ardent fans have told her they feel like they personally know her and her mom.

It would take nearly a year to get the diagnosis that confirmed what Revere already suspected: Her mother — still in her 50s — had Alzheimer’s disease. Barely 10 years since Revere left home, she found herself moving back in to become a full-time caregiver for her mom and her grandmother, diagnosed with Alzheimer’s years earlier.

“That first year and a half, I was just filled with fear: What if I lose the house?” Revere said.

Because of the stress, she said, “I went through bouts of migraines. My hair, right in the middle, fell out completely.”

“I had to figure out how to get control of all the banking, figure out the passwords, make sure the bills are paid, make sure everything’s taken care of.”

Photos of Jacquelyn Revere as a child hang in the home of her mother, Lynn Hindmon. In one video on her TikTok channel, @MomofMyMom, Revere says seeing the pictures prompted Hindmon to call her “Mommy.” (Lauren Justice for NPR)

In 2017, her grandmother died. Revere’s grief and isolation felt overpowering. Her friends in their 20s either couldn’t relate or thought she was “wallowing in pity,” Revere said.

Trying to make them understand what her daily life was like now seemed impossible. “I just wanted to find people I didn’t have to explain everything to,” she said.

Revere tried a support group for caregivers, an hour’s drive away. But the other attendees were decades older and had more financial resources. “[They] would say, ‘And now I have to take equity out of our house,’ or ‘I’m thinking of reaching into our 401(k).’ And then I would tell my story, and people would be looking at me like … a charity case, or like my problem is unsolvable. … I just felt worse.”

These days Revere no longer feels so alone. She’s a celebrity of sorts on TikTok, at least among the hundreds of thousands of people who post about the difficulties of caring for a loved one with dementia.

Daughters Are Often Dementia Caregivers

Alzheimer’s is the most common form of dementia. Others include vascular, Lewy body, frontotemporal, and mixed dementia, says the Centers for Disease Control and Prevention. Nearly all forms worsen over time, and there is no cure, although there are some treatments.

The task of caring for people with dementia usually falls on family members. Every year, an estimated 16 million Americans provide more than 17 billion hours of unpaid care for relatives or friends suffering from Alzheimer’s disease or other dementias, according to the CDC. About 60% of these caregivers are women.

“Unfortunately, there is not a very strong system of paid support for people with dementia,” said Elena Portacolone, an associate professor who studies aging and cognitive impairment at UCSF’s Institute for Health & Aging. “And so the most common way of supporting persons with dementia is the daughter.”

Like Revere, many of the women who become caregivers end up quitting their jobs. They often find themselves financially vulnerable and “extremely isolated,” said Portacolone.

Another expert, Teepa Snow, said too many caregivers are struggling. Snow, an occupational therapist in North Carolina, runs a company that trains caregivers of people with dementia. Her own how-to videos about practical, compassionate caregiving rack up millions of views. “TikTok is where people are expressing an unmet need,” she said.

Because there’s no cure for dementia, the medical community often treats it the way previous generations of practitioners treated cancer — like “a big black box,” Snow said. Decades ago, when people got cancer, “we didn’t say anything; we didn’t talk about it. We said, ‘Oh, gosh, that’s horrible.’ And people were like, ‘How long have they got?’”

What family members need from the medical system, Snow said, is more understanding of symptoms and how to handle them, more help setting up long-term support systems, and knowledge about how patients can be helped by changes to their dietary, sleep, and exercise habits.

All too often, however, caregivers are left to muddle through the complex tasks of keeping a patient safe. “That’s pretty lonely,” Snow said.

The covid pandemic disrupted or closed down much in-person support for caregivers, including the adult day care center Revere’s mom had been attending five days a week. Desperate to find social connection, Revere did what so many others did as the pandemic stretched on: She got on TikTok. The short video format has attracted caregivers, who find they can document and share the vivid moments of their worlds at home in ways that would be less visceral on text- or photo-centric platforms.

You can watch a woman’s “day in the life” video of caring for her husband with early-onset Alzheimer’s or one of Revere’s @MomofMyMom posts from 2020, which walks viewers through their bath routine.

“It’s bath day,” Revere says at the start of the post, while still lying in bed. “I try my best not to make this an emotionally draining experience,” she sighs. “So let’s begin.”

Bathing someone with dementia can be difficult, even dangerous. They can get disoriented, or feel threatened when someone takes off their clothes or maneuvers them into a wet tub. They may slip and fall, or try to fight their caregiver. Revere has created a soothing, predictable routine for her mother. At the time of this video, Hindmon is 63, and it’s about five years after her Alzheimer’s diagnosis. She’s not speaking much. Lynn Hindmon is tall, with great cheekbones. This day she’s wearing neon-blue leggings and a purple beanie.

Revere starts off by promising her mom a present — which she’ll get after the bath.

Revere walks her audience through the process, sharing what works for them. She turns on some soul music, plugs in the space heater, puts the dog outside, and lays out all her mom’s clothes. “Lure her into my cave,” she says, as her mom enters the bathroom.

The video then cuts to after the bath is over: Mother and daughter are celebrating with a bathroom dance party.

The video got more than 20,000 views. Hundreds of people left comments, saying how they can relate. One comment read: “My mother-in-law passed a year ago this week. This was the most frustrating part of caring for her. Devoted a whole day to getting this done.” Another commenter told Revere, “God Bless you! I know it’s hard. I see you and send so much love your way.”

Revere posted a follow-up right away:

“How many of us are on here?” she said into the camera. “I’ve been, like, looking for people my age that I can relate to, who have the same experience.”

Revere’s following soared from just a couple of thousand followers to more than 650,000. Many people used the comments to talk about their own caregiving struggles. They wanted to see the little victories, like Revere’s gentle, joyful tricks for getting through bath time. They also listen to Revere’s candid confessions.

“Y’all, I have never been so emotionally drained in my life,” she shared in one video. “Caregiving eats your soul. It kills your spirit. It’s constant mourning for years. … And it’s beautiful.”

A woman holds medium-sized yellow down in her lap.
Revere’s mother died in March, after six years of living with Alzheimer’s. Revere received an outpouring of support from viewers of her videos on TikTok. Since then, she’s been figuring out what her life will be after years of caregiving. Now she has time to devote to herself and her dog, Dewey.(Lauren Justice for NPR)

Content Creators Weigh Ethics of Going Public

The intimate, unvarnished depictions of dementia on TikTok have raised ethical issues surrounding privacy, dignity, and consent. There are videos on the internet of adults who haven’t consented to their most vulnerable moments being shared with millions of strangers.

In one TikTok, a woman chronicles her grandmother’s aggression, filming as the elderly woman chases her through the house, fists swinging wildly. Other content creators film the verbal abuse that caregivers can experience.

Beth Kallmyer, vice president for care and support for the Alzheimer’s Association, doesn’t think the people posting these videos intend to be exploitative. “You could tell that the caregivers just felt isolated and frustrated and at their wits’ end, with no resources,” she said.

“If I were talking to a family member … considering doing this,” Kallmyer said, “those are the questions I would pose to them: Would they [the person with dementia] be comfortable with this? Is there a way for you to film something that gets the idea across but maintains their dignity?

“Should we have a video of somebody that isn’t fully clothed? Or maybe [before Alzheimer’s] they only went outside when they were dressed to the nines or really put together, and you’ve got them in pajamas or sweatpants or whatever, and they don’t have makeup on. I’m not sure that’s the best way to go about using TikTok.”

Revere has a video that, in retrospect, she now feels ambivalent about posting. It’s the most-watched video on her channel, with 27 million views. In it, her mother is walking around the living room with an open bottle of mouthwash. She somehow got past the locks on the bathroom cabinets.

Lynn Hindmon thinks the mouthwash is a drink, like juice or milk. She looks frustrated and dazed as Revere tries to explain why she can’t drink mouthwash.

With some negotiation, Revere gets her mom to hand it over in exchange for an ice pop.

Some comments on that post call her mom an alcoholic, or say she looked scary. The experience made Revere feel protective — like she needed to be more careful, as she didn’t want to post anything that might put her mom in a bad light. Still, after much consideration, she decided to keep the mouthwash video up. She said it’s a good example of “redirecting” away from a risk — something other caregivers would understand.

On March 9, Jacquelyn Revere posted another video on TikTok, letting her followers know her mother had died. She was 65.

On TikTok, the messages of surprise and condolence poured in.

Revere, an only child, had always assumed that when her mom died she’d mourn her alone. Instead, people were checking in on her, sending her gifts, sharing memories of their favorite videos of Hindmon.

“It’s been the least lonely I’ve ever been throughout this experience, actually,” she said.

Revere has continued to post on @MomofMyMom, talking about what it feels like to miss her mom, and to mourn the life she didn’t live while she was caring for her.

Now she has time to go on dates, get a pedicure, or drive by the ocean.

After six years of caring for her mom, starting when she was just 29, Revere is now trying to figure out who she is now — and what she wants. She knows she wants to stay connected with dementia caregivers.

“I just want them to know that they’re being thought about,” Revere says. “Because that’s what I needed most. Just to know that life isn’t passing me by, and I’m not seen.

“I just want to make sure that they feel seen.”

This story is part of a partnership that includes Michigan Radio, NPR, and KHN.

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Dementia Patients Hold On to Love Through Shared Stories

Paul Rogers

Can you keep the love light shining after your partner’s brain has begun to dim? Just ask Denise Tompkins of Naperville, Ill., married 36 years to John, now 69, who has Alzheimer’s disease.

The Tompkinses participated in an unusual eight-week storytelling workshop at Northwestern University that is helping to keep the spark of love alive in couples coping with the challenges of encroaching dementia.

Every week participants are given a specific assignment to write a brief story about events in their lives that they then share with others in the group. The program culminates with a moving, often funny, 20-minute written story read alternately by the partners in each couple in front of an audience.

Each couple’s story serves as a reminder of both the good and challenging times they have shared, experiences both poignant and humorous that reveal inner strength, resilience and love and appreciation for one another that can be easily forgotten when confronted by a frightening, progressive neurological disease like Alzheimer’s.

“It’s been an amazing experience for us,” Mrs. Tompkins said of the program. “Creating our story revealed such a richness in our life together and is helping us keep that front and center going forward.”

She added that the program provides “an opportunity to process what you’re going through and your relationship to each other. It helped me digest all the wonderful things about John and how well we relate as a couple, things that don’t go away with Alzheimer’s disease. John is so much more than his disease.”

Ditto for Robyn and Ben Ferguson of Chicago, married 42 years in 2012 when they learned that Ben, a psychologist, had Alzheimer’s disease. “The diagnosis was crushing,” said his wife, who is also a psychologist. “Telling people in the program about it helped us recognize the impact on our lives and relationship and really face that. It made things feel not quite so bad.”

The Fergusons have publicly presented their 20-minute story together 19 times so far, helping to enlighten medical students and those training in social work and pastoral care, as well as researchers and members of the general public. “It reinforces our relationship as a couple, rather than caregiver and patient, even though he is 85 percent dependent on me for the activities of daily living.”

Dr. Ben Ferguson, now 69, said, “I feel we’re giving people information that could be very valuable in their future. It’s helpful to them to see us smile, have a good time and give a good report – as well as a bad report – about what goes on with this disease. It’s helpful for people to hear it from someone who has it, and it’s helped us avoid getting so morose.”

As for their presentations, which they now give almost monthly, his wife said, “They help us stay positive and give us a sense of purpose. We both feel a real need to do advocacy work, and this is the best thing we can do right now. We know there’s a sell-by date on this – we won’t be able to do it forever. But we don’t think about that now. Now we’re focused on helping people understand that your life doesn’t stop with the diagnosis. We want people to hear that you go on with your life, even though you may need a lot of help.”

Another workshop participant, Sheila Nicholes, 76, of Chicago, said of her husband, Luther, who has vascular dementia, that the storytelling “brings him back to being funny again. Writing our story together gave us a way to talk about these things, to think about where we were then and where we are now.”

Noting that dementia is “a very hush-hush illness in our black community,” Ms. Nicholes said she hoped that telling their story would help others speak more openly about it and learn to “just roll with the flow.”

The storytelling workshop, which started in January of 2014, was the brainchild of Lauren Dowden, then an intern in social work at Northwestern’s Cognitive, Neurological and Alzheimer’s Disease Center. She quickly learned from family members in a support group that “their concerns were not being addressed about dealing with loss, not just of memory, jobs and independence, but also what they shared as a couple.”

During the group sessions, Ms. Dowden said, “there’s so much laughter in the room, so much joy and love of life as well as poignancy and tears. As they move forward, as the disease progresses, they can be reminded of who they are, their strength and resilience, what has made their relationship strong, what they loved about the person, as opposed to just being patient and caregiver.”

As the program moves week to week, Ms. Dowden said, “there’s more touching, affection, looking at one another and laughing. There are delightful moments of connection when one member of a couple reveals something the other didn’t know.”

The weekly story assignments require that the couple collaborates, “and they learn how to work together in new ways, how to make adjustments, because they’ll have to make thousands and thousands of adjustments throughout the course of the disease.”

In executing the workshop assignments, Dr. Ferguson said she would ask her husband questions, he would answer and she would write down what he said. “The workshop was really transformative,” she said. “It gave us hope for our future together in dealing with this disease.”

Ms. Dowden said the feedback from those in the audience for the 20-minute joint stories has been heartening. She explained, “Students learn about the biology of neurodegenerative conditions. These stories enable them to see the human side of the disease, what it’s like to live with it, and may help them develop programs that help these families live better. In addition to the stigma, there’s a tendency to write off people with dementia.”

Ms. Dowden said she is currently refining the workshop curriculum so that it can be used as a model for other institutions to replicate. She is also expanding it to include mother-daughter and sibling pairs.

She realizes, of course, that a storytelling workshop may not be suitable for every couple. “It’s not good if there’s a lot of behavioral issues, a lot of conflict, and no insight,” she said. “But for those it does fit, it’s an opportunity to tap into the core of relationships, to still grow and learn and be delighted by one another.”

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