Biden administration sets higher staffing mandates for nursing homes

Here is the problem most nursing homes don’t meet them.
by Jordan Rau
KFF Health News

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.

Image by Alexa from Pixabay

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.

nurse with patient
Photo: PEXELS/Anna Shvets

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. 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.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

Sundowning; What happens when the sun goes down

by Tim Ditman
OSF Healthcare

Courtney McFarlin, PA
GODFREY - The 2015 horror film “The Visit” gives the Hollywood treatment to sundowning. An impostor grandmother is seen running the halls, scratching the walls and vomiting, terrorizing two children in the home.

A little exaggerated, says Courtney McFarlin, PA, an OSF HealthCare internal medicine provider who specializes in geriatrics. But she says sundowning is an all too real experience for some older adults.

What is sundowning?

McFarlin explains that sundowning is not a medical condition, but rather a way to describe behavior seen at night. It’s triggered by a disruption in your circadian rhythm.

“That’s our body’s natural, 24-hour sleep/wake cycle,” McFarlin says. “It’s regulated by the hypothalamus in the brain. Based on daylight and darkness, it tells our body to be alert during the day. And it helps us settle down in the evening to want to go to sleep.”

Key takeaways:

  • Sundowning describes nighttime behavior in older adults, especially those with dementia, due to a disruption in the circadian rhythm. The person may be agitated, moody, not want to go to sleep or physically aggressive.
  • Ways to help include medicine like melatonin, eliminating long naps and practicing general good sleep hygiene. Homes should also be arranged so the elder does not fall or wander outside.
  • A caregiver may ultimately have to decide whether to move the person to an assisted living facility.
  • Many things can disrupt your circadian rhythm, like illness, stress, artificial light and genetic factors. But McFarlin says sundowning is most often seen in older adults with dementia and similar disorders like Parkinson’s disease and Huntington’s disease. Chronic alcohol use can also bring about sundowning.

    What does sundowning look like? McFarlin says the person may be agitated, have mood changes and pace around. They may not want to go to sleep. And the person may even physically lash out at others.

    “Reports and research have shown that it’s most common when people are in mild or moderate stages [of dementia],” McFarlin says. “You would think as one progresses with dementia, it would get worse. But it actually improves a little bit.”

    How to help

    McFarlin says caregivers of older adults often come to her with a plea: help us do something about my loved one’s nighttime behavior. The caregivers are sometimes awake through the night keeping an eye on things, leading to sluggishness, crankiness and other issues during their workday.

    First, McFarlin reminds you that support groups exist – if not in-person in your community, then online – for caregivers of older adults. But for medicinal aids, McFarlin says melatonin is a good first option.

    “It’s a natural hormone that our body produces that helps aid in sleep,” she says.

    McFarlin adds that studies have found decreased levels of melatonin in older adults with or without dementia.

    Serotonin-based medications, hypnotics and anti-anxiety medications can also help. Paxil, Prozac, Seroquel, Risperdal and Haldol are common brand names. Talk to your health care provider or a sleep specialist if you have questions about these medicines.

    Something to strike from your loved one’s routine: long naps.

    “It’s suggested that a less than three-hour naptime schedule is advised,” McFarlin says. “If I find my patients are napping quite a bit, I’ll encourage them to take less naps.”

    Other sleep hygiene tips:

  • Make your home’s lighting natural: bright during the day, darker as night approaches and dark at night.
  • Make the bed the place to sleep. Do other activities like looking at screens in another room, and don’t look at screens right before bedtime.
  • Get into a routine by going to sleep and waking up at around the same time each day. And make the sleep and wake times normal, as if the older adult was going to work. Waking up mid-morning each day, while a routine, isn’t the best idea.
  • Avoid large meals, caffeine and alcohol before bed. McFarlin says lunch should be the biggest meal.
  • Stay busy during the day so you feel tired at night. Regular exercise can help with this.
  • If you are a light sleeper, use an artificial noise machine.
  • Since people with sundowning behaviors can pace and wander, make sure your home is trip-proof and escape-proof. Rugs, chairs and nightstands should be moved or removed. McFarlin says providers can also recommend physical therapy or devices like a walker, wheelchair or bed alarm.

    “[People can] actually unlock the door and wander outside in the middle of the night,” McFarlin warns. “So, make sure the door is properly locked. If the adult is someone who wanders at night, make sure they don’t have the ability to leave home.”

    Ultimately, you may have to decide whether a different living arrangement is best for your loved one.

    “That could be remaining at home and more family coming in. Because that’s our first choice – to leave the person at home as long as they can,” McFarlin says.

    “But when it becomes unsafe for the person or exhausting the caregiver, it’s my responsibility to engage other options,” like an assisted living facility, she says.


    Ten ways to thank a caregiver this holiday season

    Photo Provided

    BRANDPOINT - Chances are you know a caregiver. It could be the teacher at your child's school, balancing classroom duties and caring for an aging parent after the bell rings. Maybe it's your coworker who also takes care of a chronically ill spouse at home. Or your friend who makes time to catch up despite their busy schedule assisting their disabled sibling with everyday tasks.

    With caregivers playing such a vital role for loved ones - a spouse, child, parents or even a friend - it is important that caregivers be supported too. Becoming a fulltime caregiver is usually not a role anyone is prepared to take on and can often come with challenges and emotional hardships. However, creating connection and building support networks can provide a safety net for caregivers and give them somewhere to turn when navigating new or difficult situations.

    Supportive communities and resources are important for caregivers in every season. An easy first step in showing up for the caregivers in your own life is to express gratitude and establish yourself as a means of support and understanding.

    Need help getting started? Consider these 10 ways to say thanks to a caregiver in your life:

    1. Write a thank you note.

    Whether short and sweet or long and detailed, a simple letter expressing gratitude and recognizing everything caregivers do is an easy way to say thanks and create connection.

    Photo: Adrian/Pixabay

    2. Send them a personal gift.

    Gift cards and other small tokens of gratitude are a great way to express thanks and provide caregivers with something for themselves, encouraging self-care and prioritizing caregiver well-being.

    3. The gift of time, so they can do self-care.

    Another way to encourage self-care is by stepping in for a caregiver for a few hours, allowing them some free time to take care of themselves and do what they enjoy.

    4. Make regular visits.

    Caregiving can often be an isolating role, as many of the people receiving care may have limited mobility or spend most of their time at home. In this, it's important to physically show up for the caregiver in your life and spend quality time with them.

    5. Gift them a journal or planner.

    An important role of caregivers is to keep track of appointments, medication schedules and more. Gifting a journal or planner to help them stay organized can be an easy way to support their everyday life.

    6. Express your gratitude with food.

    Not only does cooking a meal for a caregiver help alleviate some of their workload, but it also is an effective way to connect with those around you and spark meaningful conversations.

    7. Exercise together.

    Many studies suggest that exercising with a caregiver and the person receiving care can improve both mental and physical health, making it an easy way to show thanks and prioritize well-being.

    8. Plan a movie night.

    Express thanks by arranging a movie night, setting aside time to connect and bond over a favorite movie of theirs.

    9. Have a portrait taken.

    A powerful way to create connection and meaningful memories is by having a portrait taken of caregiver and care recipient, gifting an image that will always remind them of the vital role they play.

    10. Create a team of support.

    One of the best ways to support the caregiver in your life and express consistent gratitude for all they do, is by surrounding them with a network of resources and creating a Caregiver Support Team.

    Whether it's by saying thanks, helping to establish a caregiver support network or simply spending quality time, showing up for the caregivers in your life can have an immense impact on their well-being, and in turn, can improve the quality of care they provide.

    For additional resources and to learn more about how you can ensure the caregiver in your life feels supported at every turn, connect with Careforth.


    Myths about hospice care: A bunch of things people think that aren't true

    Photo: Use at your Ease/Pixabay
    StatePoint Media - Hospice is intended to provide comfort and support to patients at the end of their life so that they can experience their remaining time in the best ways possible. Experts say that unfortunately, misconceptions about hospice often lead people to make uninformed decisions at a critical, complex juncture in their lives.

    "There is often an idea that hospice equates to giving up. But hospice is actually about taking control," says Paul Mastrapa, president and chief executive officer of Interim HealthCare Inc. "It’s the job of the hospice team to understand what a patient’s goals for end-of-life care are, and help them live that last trajectory of their life the way they want to."

    To help patients, their caregivers and family members, and those in the healthcare industry better understand the services and benefits hospice provides, Interim HealthCare is dispelling some of the most common misconceptions:

    Myth: Hospice means giving up.

    Fact: The primary goal of hospice is delivering comfort, support and specialized medical care to those ready to forgo curative treatment. Research has shown that a person who spends time on hospice has a greater quality of life at the end of their life. And while the goal is not to prolong life, there are statistics that show that hospice gives patients more time compared to patients who had the same disease trajectory and didn’t receive hospice.

    Myth: Hospice is only appropriate for the last few days of life.

    Fact: Hospice can actually last for months, and entering hospice sooner rather than later translates to fewer hospitalizations, better symptom relief and greater comfort.

    Myth: You must give up all your medications.

    Fact: While the hospice care team will make recommendations about which medications are still beneficial to a patient at their stage of illness, patients and families get the final say.

    Myth: Hospice is a place.

    Fact: Hospice can entail in-patient care, but more typically, services are delivered wherever a patient calls home. The nurse, social worker, spiritual care provider, aide and other members of the hospice care team meet the patient where they are, be that in a residential home, an assisted living community or in another institutional setting.

    Myth: Hospice is only for patients with specific diseases.

    Fact: Anyone with a life-limiting chronic disease, from congestive heart failure to pulmonary disease to Alzheimer’s, can choose hospice.

    Myth: Hospice ends when the patient dies.

    Fact: Hospice providers often offer support to those who have lost a loved one. In the case of Interim HealthCare, bereavement services are offered for 13 months.

    Myth: Hospice work is draining.

    Fact: When done right, hospice work can be extremely rewarding. Hospice care workers help patients and families find peace of mind, and reach a place of acceptance during a complicated and emotional time in their lives. Hospice workers believe in the mission of providing compassionate, patient-centric medical care and support to those at the end of their life, and they’re given a voice in the individualized care they provide.

    The hospice market is the second-fastest growing healthcare segment nationwide, according to Bank of America research, which translates to a growing number of job opportunities. Hospice providers are currently recruiting candidates just starting out in their career and those looking to make a change. To learn more, visit careers.interimhealthcare.com.

    For more information about hospice care services for yourself or a family member, visit https://www.interimhealthcare.com/services/hospice/.

    "Although people don’t always feel comfortable talking about end-of-life care, having these conversations can ensure one’s final days are peaceful and fulfilling," says Mastrapa.

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    Remote work was an underestimated benefit and blessing for family caregivers

    by Joanne Kenen
    Kaiser Health News

    Even when Beltré switched to a hybrid work role — meaning some days in the office, others at home — caring for her father was manageable, though never easy.

    For Aida Beltré, working remotely during the pandemic came as a relief.

    She was taking care of her father, now 86, who has been in and out of hospitals and rehabs after a worsening series of strokes in recent years.

    Working from home for a rental property company, she could handle it. In fact, like most family caregivers during the early days of covid-19, she had to handle it. Community programs for the elderly had shut down.

    Even when Beltré switched to a hybrid work role — meaning some days in the office, others at home — caring for her father was manageable, though never easy.

    Then she was ordered back to the office full time in 2022. By then, Medicaid was covering 17 hours of home care a week, up from five. But that was not close to enough. Beltré, now 61, was always rushing, always worrying. There was no way she could leave her father alone so long.

    She quit. “I needed to see my dad,” she said.

    Couple out for a walk

    Photo: Pixabay/Mark Thomas
    Work-from-home made it much easier for caregivers to take care of their loved ones and improve the quality of life those they were responsible for during the COVID-19 pandemic.

    In theory, the national debate about remote or hybrid work is one great big teachable moment about the demands on the 53 million Americans taking care of an elderly or disabled relative.

    But the “return to office” debate has centered on commuting, convenience, and child care. That fourth C, caregiving, is seldom mentioned.

    That’s a missed opportunity, caregivers and their advocates say.

    Employers and co-workers understand the need to take time off to care for a baby. But there’s a lot less understanding about time to care for anyone else. “We need to destigmatize it and create a culture where it’s normalized, like birth or adoption,” said Karen Kavanaugh, chief of strategic initiatives at the Rosalynn Carter Institute for Caregivers. For all the talk of cradle to grave, she said, “mostly, it’s cradle.”

    After her stepmother died, Beltré moved her father into her home in Fort Myers, Florida, in 2016. His needs have multiplied, and she’s been juggling, juggling, juggling. She’s exhausted and, now, unemployed.

    She’s also not alone. About one-fifth of U.S. workers are family caregivers, and nearly a third have quit a job because of their caregiving responsibilities, according to a report from the Rosalynn Carter Institute. Others cut back their hours. The Rand Corp. has estimated that caregivers lose half a trillion dollars in family income each year — an amount that’s almost certainly gone up since the report was released nearly a decade ago.

    Beltré briefly had a remote job but left it. The position required sales pitches to people struggling with elder care, which she found uncomfortable. She rarely gets out — only to the grocery store and church, and even then she’s constantly checking on her dad.

    “This is the story of my life,” she said.

    Workplace flexibility, however desirable, is no substitute for a national long-term care policy, a viable long-term care insurance market, or paid family leave, none of which are on Washington’s radar.

    President Joe Biden gave family caregivers a shoutout in his State of the Union address in February and followed up in April with an executive order aimed at supporting caregivers and incorporating their needs in planning federal programs, including Medicare and Medicaid. Last year, his Department of Health and Human Services released a National Strategy to Support Family Caregivers outlining how federal agencies can help and offering road maps for the private sector.

    Although Biden checked off priorities and potential innovations, he didn’t offer any money. That would have to come from Congress. And Congress right now is locked in a battle over cutting spending, not increasing it.


    They cashed in his retirement fund to hire part-time caregivers.

    So that leaves it up to families.

    Remote work can’t fill all the caregiving gaps, particularly when the patient has advanced disease or dementia and needs intense round-the-clock care from a relative who is also trying to do a full-time job from the kitchen table.

    But there are countless scenarios in which the option to work remotely is an enormous help.

    When a disease flares up. When someone is recuperating from an injury, an operation, or a rough round of chemo. When a paid caregiver is off, or sick, or AWOL. When another family caregiver, the person who usually does the heavy lift literally or metaphorically, needs respite.

    “Being able to respond to time-sensitive needs for my dad at the end of his life, and to be present with my stepmother, who was the 24/7 caregiver, was an incredible blessing,” said Gretchen Alkema, a well-known expert in aging policy who now runs a consulting firm and was able to work from her dad’s home as needed.

    That flexibility is what Rose Garcia has come to appreciate, as a small-business owner and a caregiver for her husband.

    Garcia’s husband and business partner, Alex Sajkovic, has Lou Gehrig’s disease. Because of his escalating needs and the damage the pandemic wrought on their San Francisco stone and porcelain design company, she downsized and redesigned the business. They cashed in his retirement fund to hire part-time caregivers. She goes to work in person sometimes, particularly to meet architects and clients, which she enjoys. The rest of the time she works from home.

    As it happened, two of her employees also had caregiving obligations. Her experience, she said, made her open to doing things differently.

    For one employee, a hybrid work schedule didn’t work out. She had many demands on her, plus her own serious illness, and couldn’t make her schedule mesh with Garcia’s. For the other staff member, who has a young child and an older mother, hybrid work let her keep the job.


    If caregivers quit or go part time, they lose pay, benefits, Social Security, and retirement savings.

    A third worker comes in full time, Garcia said. Since he’s often alone, his dogs come too.

    In Lincoln, Nebraska, Sarah Rasby was running the yoga studio she co-owned, teaching classes, and taking care of her young children. Then, at 35, her twin sister, Erin Lewis, had a sudden cardiac event that triggered an irreversible and ultimately fatal brain injury. For three heartbreaking years, her sister’s needs were intense, even when she was in a rehab center or nursing home. Rasby, their mother, and other family members spent hour after hour at her side.

    Rasby, who also took on all the legal and paperwork tasks for her twin, sold the studio.

    “I’m still playing catch-up from all those years of not having income,” said Rasby, now working on a graduate degree in family caregiving.

    Economic stress is not unusual. Caregivers are disproportionately women. If caregivers quit or go part time, they lose pay, benefits, Social Security, and retirement savings.

    “It’s really important to keep someone attached to the labor market,” the Rosalynn Carter Institute’s Kavanaugh said. Caregivers “prefer to keep working. Their financial security is diminished when they don’t — and they may lose health insurance and other benefits.”

    But given the high cost of home care, the sparse insurance coverage for it, and the persistent workforce shortages in home health and adult day programs, caregivers often feel they have no choice but to leave their jobs.


    Temote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom.

    At the same time, though, more employers, facing a competitive labor market, are realizing that flexibility regarding remote or hybrid work helps attract and retain workers. Big consultant companies like BCG offer advice on “the working caregiver.”

    Successful remote work during the pandemic has undercut bosses’ abilities to claim, “You can’t do your job like that,” observed Rita Choula, director of caregiving for the AARP Public Policy Institute. It’s been more common in recent years for employers to offer policies that help workers with child care. Choula wants to see them expanded “so that they represent a broad range of caregiving that occurs across life.”

    Yet, even with covid’s reframing of in-person work, telecommuting is still not the norm. A March report from the Bureau of Labor Statistics found only 1 in 4 private businesses had some or all of their workforce remote last summer — a dropoff from 40% in 2021, the second pandemic summer. Only about 1 in 10 workplaces are fully remote.

    And remote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom. An assembly line worker can’t weld a car part from her father-in-law’s bedside.

    But even in the service and manufacturing sectors, willing employers can explore creative solutions, like modified shift schedules or job shares, said Kavanaugh, who is running pilot programs with businesses in Michigan. Cross-training so workers can fill in for one another when one has to step into caregiving is another strategy.

    New approaches can’t come soon enough for Aida Beltré, who finds joy in caregiving along with the burden. She’s looking for work, hybrid this time. “I am a people person,” she said. “I need to get out.”

    She also needs to be in. “Every night, he says, ‘Thank you for all you do,’” she said of her father. “I tell him, ‘I do this because I love you.’”


    KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

    Put your end of life choices in writing


    Photo: Davide Ragusa/Unsplash

    Public News Service - On National Healthcare Decisions Day, advocates for end-of-life options are urging people to make a formal plan for the health care they want.

    One in five Americans say they weren't prepared to make critical end-of-life decisions when a family member got very sick or even died during the pandemic.

    Amy Sherman, Midwest regional campaign and outreach manager with Compassion & Choices, said that making a plan is a way to reduce stress for loved ones during a challenging time, in addition to ensuring that patients have a say in how they die and what kind of health care they do or do not want.

    "It's also a way to avoid conflict in your family or minimize conflict in your family," said Sherman. "Because often in these very tense situations, we have seen that family members may have different views around care."

    Recent surveys show 60% of 50- to 80-year-olds have had conversations with partners, family or friends about end-of-life medical care. And just under half have an advance directive - a legal document that can help make sure a patient's end-of-life decisions are met.

    Sherman said even though talking about end-of-life issues can be difficult, and putting documents in place can seem daunting, it's worth it to take the time.

    "Don't wait until you're in the car on your way to the hospital to have this conversation," said Sherman. "Make sure to have the conversation in advance."

    A pair of videos in English and Spanish from the group Compassion & Choices echo the importance of preparation - and the group also has developed an online toolkit in both languages that helps people write down an advance directive, name someone as a health-care proxy or delegate power of attorney.

    6 reason to consider a career in home healthcare

    Pexels photo
    Photo:RODNAE Productions/Pexels


    (StatePoint Media) -- Over the past 13 months unemployment rates nearly doubled their pre-pandemic levels reported in February 2020, the prospect of starting a new career after age 50 may seem unrealistic. However, industry experts say that it’s actually a great time for those in this age bracket to consider making the leap.

    "Whether you’re inspired by the healthcare heroes helping patients on the COVID-19 frontlines or you’re looking to take control over your career and future, the recession-proof home healthcare industry may be right for you," says Jennifer Sheets, president and chief executive officer of Interim HealthCare Inc., which is actively recruiting caregivers nationwide.

    Here are six reasons to consider home healthcare at this point in your career:

    1. To boost happiness
    The pandemic has created new sources of stress and unhappiness for many people. Your career is one area of your life where you can take back some control. And the right career can actually make you happier. Research from The University of Chicago shows that jobs that help and serve others are linked to the most satisfaction.

    2. To stay sharp
    Brains are like muscles -- they have to be used to stay fit. A change in career flexes your brain “muscles” by encouraging you to learn new things, step out of your comfort zone and stay challenged. Medical experts also believe that staying cognitively active may even reduce your risk of Alzheimer’s disease and dementia. With a home healthcare career, every day is different, offering a diverse array of experiences that use every facet of your skillset.

    3. To make extra money
    In uncertain economic times, earning extra money can make a big difference for nearly every family, and home care careers often allow you to bring in extra income in a way that aligns with your schedule and priorities.

    4. To meet new people
    Loneliness is tied to depression and anxiety, and it can even have negative impacts on heart health. Unfortunately, the pandemic has exacerbated this issue for many people. A new career that requires getting out and interacting with new people can alleviate some of this.

    5. To make a difference
    With headlines touting healthcare heroes, you may be feeling the pull toward a career that allows you to give back. Helping individuals who can’t (or shouldn’t) go out due to a high risk of COVID-19 complications is a valuable way to make a difference in your community.

    6. To mix things up
    There are job opportunities in home healthcare available for people of all backgrounds. However, for those already working in healthcare, this is a path offering an opportunity to get back to the heart of caregiving by providing personalized care to patients, with all the flexibility and autonomy that go with it.

    To learn more about the industry and explore job opportunities available through Interim HealthCare, which has been connecting individuals to rewarding opportunities that advance their career for more than 50 years, visit ihcmadeforthis.com.

    Time for the next chapter in your career? Consider whether home healthcare is the right step for you.

    5 steps for COVID-19 long-haulers during their recovery

    Photo: Edward Jenner/Pexels
    StatePoint Media
    More than a year into the COVID-19 pandemic, it’s becoming clear that some patients who were infected with the virus may have a longer path to recovery than others to feel like themselves again.

    As of today, there have been 1,582 confirmed cases of the Coronavirus in the six villages covered by The Sentinel. Of the 19,023 cases diagnosed in Champaign County, 18,531 are considered "Recovered". However, many of those who survived the initial onslaught to their immune system still suffer from lingering effects of the infection.

    A new analysis of Cigna claims data estimates that about seven to 10 percent of its commercial customers diagnosed with COVID-19 could be considered "long-haulers", or patients experiencing symptoms for longer than 12 weeks after initially getting sick. That claim falls in line with a study that states that about 10 percent of people who’ve had COVID-19 will experience prolonged symptoms one, two or even three months after they were infected.

    While a wide range of symptoms have been observed, the most common include a persistent cough, breathlessness, muscle and body aches, and chest heaviness or pressure. Also sometimes present are skin rashes, palpitations, fever, headache, diarrhea, and pins and needles - an uncomfortable tingling or prickling, usually felt in the arms, legs, hands or feet.

    "Much remains to be learned about the potential long-lasting effects of COVID-19, but the good news is that the health care community is working to support people in their recovery long after they leave the hospital," says Dr. Steve Miller, executive vice president and chief clinical officer, Cigna.

    Dealing with Long COVID is a struggle for many

    Dr. Miller, a nationally-recognized advocate for greater access, affordability and excellence in health care, is offering the following tips for those grappling with "Long COVID".

    1. Take care of your mental health: It’s no secret that we’re facing a mental health crisis in America that will remain long after COVID-19 restrictions are eased. Last year alone, Cigna’s pharmacy benefit manager saw a nearly 8 percent increase in people using antidepressants.

    Recovery from COVID-19 can be physically and mentally draining, especially for people whose symptoms persist for many weeks or months.

    Cigna research shows at least 5 percent of its patients who recovered from COVID-19 developed a mental health disorder in the following months. The good news is that the pandemic has rapidly accelerated the availability and adoption of a range of behavioral health options, making it easier to find a mental health counselor who can help. In fact, 60 percent of Cigna behavioral health customers are now using virtual services – 97 percent of which had previously never had a virtual visit before the pandemic.

    2. Take advantage of care managers: Many health plans have expanded access to virtual and telehealth services that can help you avoid additional trips to the clinic or emergency room.

    Equally important, some health plans offer individualized support in your recovery from a "care manager". Think of them as a personal health advocate. They will check in to see how you’re feeling, help connect you with needed specialists and follow-up treatments, and will even check in on your family.

    Patients who had a post-discharge visit with a provider, either in-person or virtually, and engaged with a Cigna care manager, saw savings of almost $2,000 in 60-day post-COVID costs. Care managers also helped people recover and return to work a full week sooner than average.

    3. Get vaccinated when you can. Some preliminary reports show that getting the COVID-19 vaccine has helped improve symptoms for long-haulers.

    4. Find a "long-hauler" clinic. Researchers are still learning about COVID-19’s long-term impacts, and there are a number of clinics opening across the country focused solely on treating COVID long-haulers. The National Institutes of Health has also dedicated $1.1 billion to the study of "Long COVID", and Cigna is coordinating closely with them and these clinics to support its customers. Connection is crucial, so also consider seeking out an online long-hauler support network like Survivor Corps.

    5. Keep practicing COVID-19 precautions. Everyone is ready to get back to doing the things they love, but none of us are safe until all of us are safe. America is in a race to reach herd immunity before more contagious variants gain momentum. Continue wearing masks, washing your hands and practicing social distancing and encourage family and friends to do the same.

    Family Caregivers, Routinely Left Off Vaccine Lists, Worry What Would Happen ‘If I Get Sick’

    by Judith Graham
    Before her stretched a line of people waiting to get covid-19 vaccines. “It was agonizing to know that I couldn’t get in that line,” said Davidson, 50, who is devoted to her father and usually cares for him full time. “If I get sick, what would happen to him?”

    Tens of thousands of middle-aged sons and daughters caring for older relatives with serious ailments but too young to qualify for a vaccine themselves are similarly terrified of becoming ill and wondering when they can get protected against the coronavirus.

    Like aides and other workers in nursing homes, these family caregivers routinely administer medications, monitor blood pressure, cook, clean and help relatives wash, get dressed and use the toilet, among many other responsibilities. But they do so in apartments and houses, not in long-term care institutions — and they’re not paid.

    “In all but name, they’re essential health care workers, taking care of patients who are very sick, many of whom are completely reliant upon them, some of whom are dying,” said Katherine Ornstein, a caregiving expert and associate professor of geriatrics and palliative medicine at Mount Sinai’s medical school in New York City. “Yet, we don’t recognize or support them as such, and that’s a tragedy.”

    The distinction is critically important because health care workers have been prioritized to get covid vaccines, along with vulnerable older adults in nursing homes and assisted living facilities. But family members caring for equally vulnerable seniors living in the community are grouped with the general population in most states and may not get vaccines for months.

    The exception: Older caregivers can qualify for vaccines by virtue of their age as states approve vaccines for adults ages 65, 70 or 75 and above. A few states have moved family caregivers into phase 1a of their vaccine rollouts, the top priority tier. Notably, South Carolina has done so for families caring for medically fragile children, and Illinois has given that designation to families caring for relatives of all ages with significant disabilities.

    Arizona is also trying to accommodate caregivers who accompany older residents to vaccination sites, Dr. Cara Christ, director of the state’s Department of Health Services, said Monday during a Zoom briefing for President Joe Biden. Comprehensive data about which states are granting priority status to family caregivers is not available.

    Meanwhile, the Department of Veterans Affairs recently announced plans to offer vaccines to people participating in its Program of Comprehensive Assistance for Family Caregivers. That initiative gives financial stipends to family members caring for veterans with serious injuries; 21,612 veterans are enrolled, including 2,310 age 65 or older, according to the VA. Family members can be vaccinated when the veterans they look after become eligible, a spokesperson said.

    “The current pandemic has amplified the importance of our caregivers whom we recognize as valuable members of Veterans’ health care teams,” Dr. Richard Stone, VA acting undersecretary for health, said in the announcement.

    An estimated 53 million Americans are caregivers, according to a 2020 report. Nearly one-third spend 21 hours or more each week helping older adults and people with disabilities with personal care, household tasks and nursing-style care (giving injections, tending wounds, administering oxygen and more). An estimated 40% are providing high-intensity care, a measure of complicated, time-consuming caregiving demands.

    This is the group that should be getting vaccines, not caregivers who live at a distance or who don’t provide direct, hands-on care, said Carol Levine, a senior fellow and former director of the Families and Health Care Project at the United Hospital Fund in New York City.

    Rosanne Corcoran, 53, is among them. Her 92-year-old mother, Rose, who has advanced dementia, lives with Corcoran and her family in Collegeville, Pennsylvania, on the second floor of their house. She hasn’t come down the stairs in three years.

    “I wouldn’t be able to take her somewhere to get the vaccine. She doesn’t have any stamina,” said Corcoran, who arranges for doctors to make house calls when her mother needs attention. When she called their medical practice recently, an administrator said they didn’t have access to the vaccines.

    Corcoran said she “does everything for her mother,” including bathing her, dressing her, feeding her, giving her medications, monitoring her medical needs and responding to her emotional needs. Before the pandemic, a companion came for five hours a day, offering some relief. But last March, Corcoran let the companion go and took on all her mother’s care herself.

    Corcoran wishes she could get a vaccination sooner, rather than later. “If I got sick, God forbid, my mother would wind up in a nursing home,” she said. “The thought of my mother having to leave here, where she knows she’s safe and loved, and go to a place like that makes me sick to my stomach.”

    Although covid cases are dropping in nursing homes and assisted living facilities as residents and staff members receive vaccines, 36% of deaths during the pandemic have occurred in these settings.

    Maggie Ornstein, 42, a caregiving expert who teaches at Sarah Lawrence College, has provided intensive care to her mother, Janet, since Janet experienced a devastating brain aneurism at age 49. For the past 20 years, her mother has lived with Ornstein and her family in Queens, New York.

    In a recent opinion piece, Ornstein urged New York officials to recognize family caregivers’ contributions and reclassify them as essential workers. “We’re used to being abandoned by a system that should be helping us and our loved ones,” she told me in a phone conversation. “But the utter neglect of us during this pandemic — it’s shocking.”

    Ornstein estimated that if even a quarter of New York’s 2.5 million family caregivers became ill with covid and unable to carry on, the state’s nursing homes would be overwhelmed by applications from desperate families. “We don’t have the infrastructure for this, and yet we’re pretending this problem just doesn’t exist,” she said.

    In Tomball, Texas, Robin Davidson’s father was independent before the pandemic, but he began declining as he stopped going out and became more sedentary. For almost a year, Davidson has driven every day to his 11-acre ranch, 5 miles from where she lives, and spent hours tending to him and the property’s upkeep.

    “Every day, when I would come in, I would wonder, was I careful enough [to avoid the virus]? Could I have picked something up at the store or getting gas? Am I going to be the reason that he dies? My constant proximity to him and my care for him is terrifying,” she said.

    Since her father’s hospitalization, Davidson’s goal is to stabilize him so he can enroll in a clinical trial for congestive heart failure. Medications for that condition no longer work for him, and fluid retention has become a major issue. He’s now home on the ranch after spending more than a week in the hospital and he’s gotten two doses of vaccine — “an indescribable relief,” Davidson said.

    Out of the blue, she got a text from the Harris County health department earlier this month, after putting herself on a vaccine waitlist. Vaccines were available, it read, and she quickly signed up and got a shot. Davidson ended up being eligible because she has two chronic medical conditions that raise her risk of covid; Harris County doesn’t officially recognize family caregivers in its vaccine allocation plan, a spokesperson said.


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