Since 2017, three generations have taken care
of Gladys Ortiz, an 83-year-old woman who lives in Miami and struggles
with Parkinson's and dementia. Among them is her daughter, Yanira
Portuondo, who views being a caregiver for Ortiz as a second, full-time
job.
"She's having hallucinations. Sometimes she doesn't recognize
me. There are days that, going from the living room to the bathroom,
she gets lost," Portuondo said.
Without help, Portuondo says her mom "wouldn't last a week by herself."
The
family is luckier than some. Medicaid pays for a home care aide to
pitch in 38 hours a week. But that still leaves 130 hours in a week —
every week — where the family's spending time and money on her care.
"Everyone
has a life of their own, of course, but the priority is making sure
she's okay. We try to make sure that everybody's needs have been met,"
Portuondo said.
Nearly 70% of Americans aged 65 and older will require some form of long-term care
during their lifetime, according to the U.S. Department of Health and
Human Services — and the cost of this type of care will likely be
difficult to pay out of pocket for many Americans.
"If you're not a
caregiver, you'll either need caregiving or you'll become a caregiver,"
said Dr. Myechia Minter-Jordan, the CEO of AARP.
That's why the issue is one of the organization's top priorities.
"I
definitely think it's a crisis. How do I make decisions about their
care? How do I have the financial means to be able to do this?"
Minter-Jordan said.
In the U.S., family caregivers, on average, spend a quarter of their income taking care of loved ones, according to AARP.
Some
states are looking to help ease the burden. In 2023, Washington state
added a payroll tax, money now used to fund long-term care insurance for
its residents. A dozen other states are considering variations of long-term care taxes. AARP is also advocating for a $5,000 federal tax credit to benefit caregiving families.
"It's not going away, and the problem is only going to increase," Minter-Jordan said.
Meanwhile, Portuondo worries about the future — in 20 years, will her daughter have to care for her?
"I
could never have imagined I would be in this position ever," Portuondo
said. "Most of the time, I'm exhausted. But every time she gives me one
of those smiles, you know, it gives me a little strength to keep going."
For millions of American families, caregiving is a labor of love that can demand every bit of both.
Community advocate Todd Stein shared why he
believes long-term care is often avoided by seniors, saying they’re
afraid of losing their independence.
Stein explained the importance of long-term planning and said it puts
elderly people at risk for financial, mental and even physical abuse.
He talked about his own parents’ experience in senior care, where
they were victims of abuse, and shared some warning signs to look out
for.
Stein also discussed the dangers of guardianship and said it can
strip away an individual’s identity, take advantage of their financial
standing, or isolate them from friends and family.
Although aging is a blessing, it can bring about some challenges. A
loved one of yours may reach the point where they need long-term care,
whether in the form of a home health aide, an assisted living facility,
or a nursing home, and it's essential to plan and prepare for it.
A study
by Urban Institute for the U.S. Department of Health and Human Services
(HHS) found that 70% of adults who survive to age 65 develop a severe
need for long-term services and support before they die. And
unfortunately, the costs involved can be catastrophic.
In 2023, the monthly median cost to have a home health aide was $6,292, according to Genworth.
The monthly median costs to stay at an assisted living facility and a
private room at a nursing home were $5,350 and $9,733, respectively.
Seeing as how the median retirement savings account balance of
Americans ages 65 to 74 was just $200,000 as of 2022, according to the
Federal Reserve, it’s clear that the typical senior can’t afford these
expenses. The problem, though, is that Medicare won’t pay for long-term
care, and many people can’t afford separate insurance to help pick up
the tab.
If you have a loved one who needs long-term care, you may have a
choice – place their assets into a trust to qualify for Medicaid, which
commonly pays for long-term care, or deplete their assets by paying for
long-term care only to potentially have them wind up getting government
assistance anyway. When you think about it that way, the decision to opt
for a trust is a pretty easy one to make.
The problem with long-term care
It’s a big myth that
Medicare enrollees are entitled to coverage for long-term care. Medicare
will only pay for care that’s medical in nature. If you have surgery
and need to recover for a few weeks in a skilled nursing facility,
that’s covered under Medicare Part A.
But long-term care is often
not medical in nature, but rather, custodial – meaning, pertaining to
everyday activities. And while Medicare will pay for you to recover from
an injury or have and recuperate from surgery, it won’t pay for someone
to help you with everyday living (things like bathing, dressing, and
cooking) not related to a medical issue. (And no, aging is not
considered a medical issue.)
It’s for this reason that so many
older Americans end up with a financial dilemma when they realize they
can’t afford long-term care. And while long-term care insurance could
help cover those costs, it can be prohibitively expensive.
The American Association for Long-Term Care Insurance
puts the average cost of a plan first purchased at age 65 at $1,700 a
year for men and $2,700 a year for women for up to $165,000 in benefits.
And while it's possible to lock in lower annual premiums by putting
coverage in place at a younger age, you're then paying those premiums
for a longer period of time. So that’s not a great solution.
Using Medicaid to pay for long-term care
While Medicare typically won’t pay for long-term care, Medicaid often will. Non-profit KFF estimates
that in 2020, 4.2 million people used Medicaid long-term services and
supports (LTSS) delivered in home and community settings and 1.6 million
used LTSS delivered in institutional settings. Medicaid covered over
half of all LTSS spending in the U.S. that year.
The problem, though, is qualifying for Medicaid.
Eligibility
for Medicaid varies by state, but generally your income and assets need
to be below a certain limit to get approved. Certain types of assets
and income are exempt from calculation. If your countable income and
assets exceed the limit, a state may still find you eligible if you
"spend down" the excess.
Another way to meet the asset limit is
to strategically move assets into a trust so they’re not counted as
income. Specifically, you'll want to look at a Medicaid Asset Protection
Trust. As the name implies, it's an irrevocable trust designed to
exclude assets from being counted toward Medicaid eligibility. If a
trust of this nature is established, and assets are transferred into it
five years before your loved one applies for Medicaid's long-term care
benefits, those assets will not impact their ability to qualify.
But
while establishing one of these trusts is perfectly legal, the question
is, is it immoral? And the answer is, not necessarily.
The whole
reason these trusts exist is because far too many seniors would be
trapped without them. Also, think about it this way. Your loved one
worked hard to accumulate some assets. Does your family deserve to lose
out on them because the need for long-term care arose and you can’t
reasonably pay for it?
Furthermore, say you decide not to create a
trust and you deplete your loved one’s assets paying for care for a
period of time. At that point, your loved one might qualify for Medicaid
anyway.
All told, there’s a huge gap in coverage for long-term
care, and that’s something lawmakers may need to address given an
increasingly aging population. But for now, you shouldn’t feel overly
guilty for exploring a legal loophole designed to help families of
modest means afford the long-term care they need.
If you ever want to see something really wrong, just watch two sides
fight when both think they’re really right. It usually isn’t pretty.
That describes the climate created by the nursing home staffing mandate proposed on Friday.
Even before the release, providers had lobbied hard to impress upon
rulemakers that there isn’t enough money in the government propped-up
system to fund what they want. Nor enough bodies to fill the
workstations they desire.
On the other side of the arena stands a crowd of regulators,
consumers/voters, labor groups and academics who want more for patients.
Some seem to be suspicious of any provider that doesn’t prolong health
status indefinitely. Most are pretty adamant that they are going to
fight for higher nurse-hours-per-day requirements, and — fair warning —
they will have public sentiment on their side.
With the official publishing of the rule in the Federal Register today,the
Centers for Medicare & Medicaid Services opens a 60-day comment
period on its staffing proposal. Hold on to your hats, folks. It’s
likely to become one of the most prolific, passionate comment periods
ever.
All in the name of getting the “right” views out.
Who’s right? Those who want more people to live longer lives. Those
who say they could use a lot more help making this happen, especially
since government funding is supposed to make it all work.
Those who say there aren’t enough nurses to meet targets in the
controversial proposal — and won’t be for years, even with increased
focus on raising the number. Those who say Friday’s proposal could have been much worse for providers. Those who think the final rule will make providers’ tasks tougher.
Those who say bolstering training programs for nurses — and their
would-be educators — is needed. Those who sneer that 75 million federal
dollars for building such programs is anywhere near enough to do it.
Who else is right? Those who say there ought to be some kind of floor
put on the level of staffing in skilled nursing facilities. Those who
say a one-size-fits-all approach won’t work.
Those who want surveyors to be more consistent, and more open with
advice. Those who wonder where more surveyors will come from since their
ranks are also so depleted.
Who else is right in this Story of the Year showdown? Centers for
Medicare & Medicaid Services report authors who found “no single
staffing level that would guarantee quality care.” Also, those who
believe that report will be one of providers’ most powerful tools
against mandated staffing levels.
Also right are those who look to build flexibility and waivers into any final rule.
The right crowd includes those who say more skilled nursing wings,
floors and entire facilities will continue to close if staffing levels
have to go up. And maybe even if they don’t. Others right include anyone
who frets that out on the prairie, and other secluded areas, it is
going to get tougher if you need, or want to provide, nursing home care.
Who else is absolutely right? Those who say skilled nursing is a needs-based industry that will never go away.
Most of all, those who are right include those who see Friday’s proposal as only the beginning.
In other words, considering all of the above, everyone has some share of “right” in their corner.
The howling about the rule picked up right after it was released
Friday. But more, stiffer blowback is coming — and from all directions.
On that, I know I’m right.
James M. Berklan is McKnight’s Executive Editor.
Opinions expressed in McKnight’s Long-Term Care News columns are not necessarily those of McKnight’s.
WINCHESTER — About
40% of the roughly 80 employees in the Frederick County Department of
Social Services have received the COVID-19 vaccine, despite it being
offered to all of them.
Those
who didn’t get vaccinated weren’t asked why, though some expressed
concern about the safety of the vaccine while others cited pre-existing
medical conditions, DSS Director Tamara Green said following Tuesday’s
Frederick County Social Services Board meeting.
Green told the board that the department continues to make safety a priority.
Some
employees have been teleworking as many as four days a week as a
precaution during the ongoing pandemic, she said. But the department
hopes to soon return to a full A/B schedule, where half of the staff
works in the office one day and the other half another day. This could
happen if public schools expand in-person learning or at the start of
the summer. She said staff are being encouraged to start thinking about
child care arrangements now, as day care centers have limited slots
available.
“One of our concerns
for staff that we continue to discuss is there’s going to be limited
child care,” Green said. “... It is a concern, we continue to try to be
flexible and adaptable. Telework has been working so far and when issues
do arise we address them, but so far we have been able to meet all of
our mandates, and we’ve been successful with keeping people out of the
office. So when you walk through you’ll notice there’s about anywhere
from 40% to 50% of the staff here. We are just waiting to get back to
normal. I think we all have a bit of Zoom and WebEx fatigue.”
Also
at the meeting, Susan Hockensmith, the department’s supervisor for
Adult Protective Services, said in normal years there’s usually an
increase around January in the number of adults referred for protective
services.
“This year with
COVID, we didn’t really have the January slam, as we call it,”
Hockensmith said. “We’ve just been busy all along.”
The
county’s APS investigates reports of abuse, neglect and exploitation of
adults age 60 and over and incapacitated adults over age 18, then
provides services if deemed necessary. According to the county website,
the goal of APS is to protect a vulnerable adult’s life, health and
property without a loss of liberty.
There were 47 APS reports in November, 30 in December, 38 in January and 36 in February.
Hockensmith
said self-neglect continues to be the biggest problem among adults the
department is helping, while there has been a “significant dip” in
financial exploitation cases.
“With
COVID, the last four months or so, we’ve seen a real dip in the
referrals coming in for financial exploitation, which is concerning
because we know it hasn’t stopped,” she said.
As
a result of the pandemic, she said it continues to be difficult to
secure Medicaid waiver providers to provide in-home care to
elderly/disabled adults who are Medicaid eligible. Most providers have
waiting lists. She said the department is seeing delays of weeks and
months to get providers into homes, which means those adults are at a
higher risk of abuse and neglect for longer periods of time.
The
lack of available home care has led to hospitalizations and resulted in
some clients entering nursing facilities for long-term care sooner than
they may have under normal conditions. She added that nursing facility
placements continue to be difficult to secure during the pandemic.
BISMARCK, N.D. (KFYR) - The Centers for
Medicare and Medicaid Services have doubled the number of days Medicaid
residents in skilled nursing homes can visit their families.
Days
before the holiday season, residents can now live with their families
for 48 days this year. North Dakota, like many other states, requested
the expansion after getting calls from families.
Visitation in long-term care has been a regular point of contention as we get closer to the holidays.
Families
want to see their loved ones, but the facilities and the federal
organizations that oversee them are trying to prevent the spread. For
the remainder of 2020, residents can stay with their families for an
additional 24 days.
The reason there’s a cap in the first
place is so residents can save their spots in the facilities and for the
organizations to maintain federal funding.
The
Department of Human Services says those interested should talk to their
loved one and discuss the pros and cons. Adding it’s all about giving
people choices.
“This isn’t about the
flexibility that all residents would take up or should take up. But it
really is about giving people the option about whether or not they want
to bring their loved one home,” said ND Medicaid Director Caprice Knapp.
For
those who leave the nursing home, the CMS asks you limit contact with
people and shared items, be cautions with food serving practices, and be
on the lookout for COVID-19 symptoms.
DHS is warning residents may have to quarantine for up to 14 days upon
returning to their skilled nursing facility, even if a rapid test says
they are negative earlier.
At age 42, James Reilly has lived in a nursing facility for seven
years because of a worsening seizure disorder that struck when he was
born. Betsy and Tom Reilly have been by their son’s side each day,
gently exercising his limbs, monitoring his oxygen, and being James’
“extra set of eyes” since he cannot speak for himself. But a visitation
ban abruptly begun in mid-March due to COVID-19 has left the Valley
Center, California, couple shut out for seven months and sleepless with
worry.
The Reillys are not alone in enduring this long separation. A
patchwork of lockdown policies, even within states, also has blocked
many other families across the country from reuniting with loved ones in
nursing homes and other care facilities. With depleted patience, more
than 13,000 of them have banded together in a Facebook group, wanting access as essential family caregivers who routinely deliver hands-on care.
The continued isolation of these fragile residents is triggering
alarm among advocates that yet another crisis looms. It is among many
key concerns to have emerged as the deadly virus ravaged nursing homes
throughout the United States, alongside such issues as lack of
sufficient personal protective equipment and testing, and state policies
mandating or incentivizing nursing facilities to accept
COVID-19-positive patients.
But these latest troubles are merely symptomatic of a broader
constellation of nursing home issues that predate the pandemic. COVID-19
pulled back the curtain on longstanding cracks in the entire long-term
care system, exposing deep flaws in the way we care for our country’s
most vulnerable people.
Ailing Delivery System, Nursing Home Default
Those of us who have experienced the anguish of navigating the US
health care maze with our loved ones during their prolonged illnesses
learned that the delivery system itself is ailing. The insurmountable
obstacles we typically face include a lack of care continuity and
coordination in a siloed medical world and systemic coverage bias
favoring institutions rather than home.
In our quick-fix, outcome-driven culture, we also have discovered
that prejudice against disabled people in word and deed is not
uncommon—even among some members of the medical community who insert
their own views about our loved ones’ “quality of life,” a subjective
gauge used as the calculus of their worth.
As patients leave the hospital sooner and sicker than ever, such
myopic narratives weigh heavily against those who are slow or enigmatic
in their healing. Hospital discharge planners’ overriding goal is
finding an empty bed, and screeners from quality acute-care
rehabilitation programs have standards so tough, it’s nearly impossible
to make the cut.
“You’ve got to have a really clear diagnosis and a very good
prognosis,” says Jerry Parrotta, a home-care physical therapist with
York Hospital Homecare in York, Maine, who has worked in various health
care settings.
The default for most people with prolonged illness is a nursing home.
Our fruitless struggles for alternatives have convinced us family
caregivers that “patient-centered care” is meaningless health-speak
meant to have us believe there is choice. The outlook often is bleak,
with our loved ones falling victim to nursing facilities’ persistent
challenges such as understaffing and infection control that have been
exacerbated by the COVID-19 pandemic.
With the visitation bans, many are without critical family supports
that had helped them to eat, drink, and get out of bed, says Robyn
Grant, director of public policy and advocacy at The National Consumer Voice for Quality Long-Term Care.
Relatives able to visit virtually with residents, as well as long-term
care ombudsmen, have reported signs of physical decline, such as
significant weight loss, and one woman was hospitalized several times
for dehydration, she says.
Younger Population, Outdated Assumptions
The problem is that nursing homes still operate on antiquated
assumptions made decades ago about the complexity of care their
residents require. Previously, older adults populated nursing homes
primarily for custodial care and needed little in the way of medical
intervention. Scientific advances have introduced treatments for
illnesses that previously were synonymous with death but now can be
managed with medicine and therapies. As a result, those who wind up in
nursing homes—many after typically brief hospital stays—are
extraordinarily frail, with multiple underlying conditions that demand
elaborate medication regimens, says Christopher E. Laxton, executive
director of AMDA—The Society for Post-Acute and Long-Term Care Medicine.
And there is a notable rise in young patients bringing unique
challenges. They are disabled by neurological disorders, trauma, or drug
abuse. And like James Reilly, many have myriad afflictions from birth.
According to Laxton, younger adults are estimated to be the
fastest-growing subpopulation in post-acute and long-term care,
increasing to 16.5 percent in 2016.
But the nursing home model has not adapted to this significantly more fragile group.
“You’ve essentially turned the nursing home into a step-down unit of
a hospital without staffing it adequately,” Laxton says. “Really in the
end, the major factor in good infection control is adequate staff, and
staff who are dedicated to a wing or floor.”
No Federally Mandated Staffing Ratios; Studies On RN Levels, COVID-19
But despite this crying need, there are no federally mandated staffing
ratios for nursing homes. Most certified nursing assistants care for
about 15 patients per shift, and staff nurses supervise two to three of
those assistants, Laxton says, but staff nurses also administer
medication and assume other critical duties for those 30 to 45 patients.
He characterized that staff-to-patient ratio as “ridiculous” when
compared to hospitals, where intensive care unit nurses work with
fragile patients in ratios of one to one or one to two.
A recent study of Connecticut nursing homes found higher registered nurse staffing was associated with lower incidence of COVID-19 cases and deaths. Another study
of California nursing homes found that facilities with total registered
nurse staffing levels under a recommended minimum standard of 0.75
hours per resident day had a two times greater probability of having
COVID-19 resident infections. But 80 percent of the state’s nursing
homes didn’t meet that standard.
Infection control challenges were prevalent even before the current
pandemic, but with weak consequences for shortcomings. According to a Government Accountability Office report
issued in May, 82 percent of more than 13,000 nursing homes surveyed
had an infection prevention and control deficiency cited in one or more
years from 2013 to 2017. But the Office’s review of federal data shows
that “implemented enforcement actions for these deficiencies were
typically rare.”
Cracks In Home And Community Care
Amid all this, the path to accessing quality care that could
forestall the move to a nursing facility is packed with impediments.
Home care, for the most part, is structured for short-term use. “They
want to cut it off as soon as we get in there,” says Parrotta, the Maine
physical therapist.
Adult day health programs—a vital community lifeline that provides
social and medical support while offering families respite—don’t fare
much better. Interest is high, but running them is challenging, says
Lance Roberts, associate director of the National Adult Day Services
Association in Fairfax, Virginia. That is due to inconsistent Medicaid
reimbursement, which varies from state to state, and the difficulty
attracting private-pay clients.
These systemic cracks are becoming even more pronounced as an
unprecedented 78 million baby boomers age into an array of complex
conditions, an imminent crisis with no policy framework for meeting
their anticipated needs. Boomers have fewer or no children and are more
likely to be divorced than in previous generations, so their pool of
family caregivers is smaller.
Toward A Disruptive Model Of Long-Term Care
Among the many painful lessons COVID-19 has inflicted is this: Our
approach to caring for the vulnerable among us has failed, with nursing
home residents disproportionately stricken. It’s time to abandon our
deeply entrenched and outdated views of long-term care in favor of a
disruptive model that invests more heavily in quality home and community
services such as leading-edge adult day health programs, each with
rigorous standards.
This will require a shift in funding that traditionally has skewed
toward large institutional settings with shared rooms, which COVID-19
demonstrated just don’t work, says Tony Chicotel, staff attorney for
California Advocates for Nursing Home Reform. For those with medical
challenges too complex for viable home solutions, nursing care
restructuring is in order.
Advocates, including Chicotel, say innovative arrangements such as The Green House Project, can serve as models. The organization, which cares for fewer residents in home-like settings, claims
95 percent of its homes licensed for skilled nursing were COVID-19-free
as of June. In these types of surroundings, Chicotel notes, “it’s
easier to know every resident’s story, to know what works for them,”
enabling more individualized care. And a smaller-scale
environment—absent the long corridors and massive dining halls—coupled
with consistent staff assignments also reduces exposure points,
translating into fewer vectors for any virus, he adds.
Such a giant pivot hinges on a broad commitment to enhancing the care
of our growing disabled community while also supporting their
caregivers, paid and unpaid. It calls for entrepreneurial ingenuity, and
it will take strong political will regarding care-coverage options and
the creation of and adherence to authentic quality standards.
Families currently embedded in long-term care, such as the Reillys,
don’t have the luxury of time that such transformation demands. But
galvanizing now will ease the way for countless others who likewise will
struggle with sickness, as well as their families who will shepherd
them through life’s most difficult passage.
Can a person really die of loneliness? Yes, they can, according to KSTP Medical Expert Dr. Archelle Georgiou.
"Absolutely, it's toxic and is as dangerous as smoking 15 cigarettes a day," Dr. Georgiou said.
Dr. Georgiou said families worried their loved ones in assisted
living or nursing homes will die of loneliness over the winter have a
real concern. And, she welcomes the news that the state of Minnesota is
easing visitor restrictions starting Saturday, Oct. 17.
FILE - In this July 17, 2020 file
photo, a senior citizen holds the hand of a care coordinator at a Health
facility in Miami. One in five U.S. nursing homes say they still faced
severe shortages of protective gear like N95 masks this summer,
according to a study Thursday that also found facilities struggled with a
lack of staff as COVID-19 cases rebounded.
"I am so thrilled we're balancing the risks and benefits of keeping
people in nursing homes and the elderly isolated," said Dr. Georgiou.
"It's just been so difficult for everyone. People just want to be
together."
To learn more about what happens inside our bodies when we're lonely that can make us sick, click on the video box above.
About two years ago, Beverly Ketter’s husband was diagnosed with dementia.
Still,
the couple led an active life, Ketter said. Every Wednesday night, they
would play cards with friends. Every Saturday, they would go dancing.
And until this year, Ketter was able to take care of her husband by
herself.
But in the early months of 2020, things began to change.
Ketter
said the “intelligent, smart” and “gentle” man she had been married to
for 68 years started to show signs of aggression. He wasn’t sleeping
well. And Ketter soon realized she needed help.
Her husband was approved for in-home hospice care, and nurses started coming in regularly to check on him.
Then, the coronavirus pandemic hit.
Ketter
and her husband began quarantining at home around the time stay-at-home
orders were handed down to Shawnee County residents in late March.
Hospice nurses still visited them about once a week, but other than
that, Ketter and her husband were alone.
“We didn’t go anywhere,” she said. “He would keep saying, ‘Where is everybody? How come nobody comes to see us?’”
That lack of human contact started to take a toll.
“He got so bad during March and April,” Ketter said. “I really think the isolation caused him to get bad so fast.”
After
an incident in early July, Ketter knew her husband couldn’t live at
home anymore. She decided to place him in a memory care facility,
choosing Oakley Place in Topeka.
Ketter said she was able to visit
him for about 45 minutes each day because he qualified for hospice —
though there was about a month’s time during parts of August and
September when COVID-19 cases had surfaced at Oakley Place, causing the
facility to restrict visitation even for hospice residents.
Ketter
said she was grateful for those regular visits. She recognized many
people haven’t had that luxury, as a number of nursing homes in the area
continue to restrict visitation.
“I just can’t imagine what it’s like,” Ketter said. “I think these people are deteriorating by not having social contact.”
Her husband died Thursday, less than three months after leaving his home.
Isolation’s impact
Visitation at nursing homes in Kansas, and across the country,
has been restricted during the ongoing pandemic, as facilities attempt
to limit the spread of a virus that has been shown to result in more
serious health conditions for those in high-risk categories, including
the elderly. Shawnee County’s health officer announced late last month
that visitations may resume under certain conditions, but allowing
visitations and restricting them both come with a cost.
In early
September, the Office of the Kansas Long-term Care Ombudsman surveyed
family members of residents living in long-term care facilities. The
survey found that residents felt like they were in prison, expressed no
interest in living and actually had their conditions worsen when
visitations weren’t allowed.
“We know that they are dying in there, the isolation is literally killing them,” wrote one anonymous survey respondent.
“My
father has aged tremendously during this lockdown,” another said. “He
also is not as cognitive. Says daily he feels like a prisoner.”
Only
32% of survey respondents said their loved ones in a nursing home or
assisted-living facility could answer the phone by themselves. The
survey also indicated even outdoor visitation has been limited, as the
majority of respondents said they weren’t allowed to visit loved ones
outside for more than 30 minutes at a time.
″(My mom) is depressed, on medication and dying from loneliness,” a respondent wrote. “My God please help.”
According
to Carol Adams, a licensed clinical psychologist at Stormont Vail
Behavioral Health Center, social isolation and loneliness can exacerbate
health issues.
“The primary impact of social isolation on the elderly, and not
only the elderly, is increased depression and anxiety,” Adams said.
She
added that the uncertainty surrounding the pandemic has caused many
people — in and outside of nursing homes — to fear interacting with
others because of the possibility of contracting COVID-19. That fear can
lead to heightened stress, Adams said.
“Stress can also do things
like increase blood pressure and increase blood sugars,” she said,
pointing to the fact that social isolation doesn’t just take a toll on a
person’s mental health.
“We know based on research that mental
health conditions do have an impact on physical wellbeing,” Adams said.
“Prolonged stress reduces our immune system and our response to physical
conditions. ... With stress people can have headaches. They may not be
eating as well as they used to. And we’ve also seen where people don’t
have as much access to nutritional food because of COVID — and
medicines. So it really has impacted particularly our elderly in a very
intense fashion.”
Ketter, who placed her late husband in a care
facility over the summer, speculated social isolation may have caused
his dementia to deteriorate faster than expected. Adams said that’s
certainly possible.
“I do believe that can happen,” Adams said.
“Social isolation, lack of stimulation to the brain, depression, anxiety
— all of those things can exacerbate cognitive difficulty in older
folks.”
In her current practice, Adams works with adults of all
ages, but she spent nearly 20 years in nursing homes doing consultations
and providing mental health treatment for the elderly. Given that
experience, Adams said it is crucial for long-term care facilities to
provide residents the ability to participate in telehealth. She said
those facilities must also find creative ways to meet the social and
emotional needs of their isolated seniors.
“I think providing more education to residents, providing
personal protective equipment and continuing to have group activities —
very small groups and socially distancing people but giving people the
opportunity to get out and see their peers in facilities so that they’re
not feeling so socially isolated,” Adams said.
According to Carol George, vice president of operations at Aldersgate
Village in Topeka, Aldersgate has already begun to get creative with
its offerings.
George said Aldersgate Village personnel have
created local television channels for residents to view and have
purchased smartphones for the facility’s nurses so that residents can
make video calls. The special TV channels, which were set up by
partnering with Cox Communications, feature shows about exercising, solo
activities residents can complete and daily devotionals from a pastor,
George said.
Reunions on the horizon
Relief in the form of limited visitations may be on the horizon for residents of long-term care facilities and their families.
Shawnee
County health officer Gianfranco Pezzino announced Sept. 17 that
visitation may resume if those facilities meet requirements laid out by
the Centers for Medicare & Medicaid Services. For indoor visitations
to resume, facilities must have no new COVID-19 cases for 14
consecutive days. They must also limit the number of visitors at a time,
regularly disinfect facilities, practice proper hygiene, have staff
wear personal protective equipment and have visitors wear masks.
Restrictions
are looser on outdoor visitation, and CMS recommends “all visits should
be held outdoors whenever (practical).” CMS recommends limiting the
number of visitors for outdoor visits, but it allows nursing homes to
determine that cap.
To resume visitations, counties must also have a positivity
rate lower than 10%, otherwise only compassionate care visits are
allowed. Compassionate care visits may include end-of-life situations, a
situation in which a resident is grieving the loss of a family member
or friend, or when a resident is struggling to adjust to their new
environment in a care facility.
According to George, Aldersgate Village residents were ecstatic to hear some visitation was resuming.
“I
wish you could experience that,” she said. “That look in somebody’s eye
when they haven’t seen their son or daughter for so long — it just
makes you cry.”
Lester Israel, 85, lives at Oak Creek Senior
Living in Topeka. He said a lot of the people at his assisted-living
facility need to see their family. But while Israel feels safe at Oak
Creek, he knows that just one COVID-19 case “could wipe out the whole
facility.”
His remark points to the balancing act many long-term
care facilities are performing — do they allow visits and risk cases, or
do they continue to restrict visits and risk mental health?
Scott
Brunner, deputy secretary of hospitals and facilities at the Kansas
Department of Aging and Disability Services, said that when balancing
those considerations, the scale should lean toward visitation. He said
telecommunication visits and those in which a family member must
communicate with their loved one from outside a window just aren’t the
same as in-person interaction.
Visitation may come with a cost
The Kansas Department of Health and Environment has reported
that nearly a third of the state’s coronavirus clusters are linked to
long-term care facilities. But while those care facilities account for
about a third of the cluster sites, they are associated with more than
85% of the state’s cluster-related deaths.
Aldersgate Village,
which Medicare.gov has deemed a four-star facility, has had, as of early
October, the most confirmed COVID-19 cases and deaths of any nursing
home in Topeka. The facility has had 73 confirmed cases, 18 suspected
cases and 14 deaths linked to COVID-19, according to the Centers for
Medicare & Medicaid Services’ nursing home database.
A Sept.
25 memo to residents at Aldersgate Village announced outdoor visitation
had resumed, but a week later on Oct. 2, the facility announced a staff
member had tested positive. Still, Aldersgate is scheduling outdoor
visitation.
Brian Lee, executive director of Families for Better
Care, said he fears there will be a spike of coronavirus cases in
long-term care facilities if these homes aren’t better supported when
visitation is allowed. Lee said nursing homes and assisted-living
facilities don’t have enough molecular, rapid testing at the door to get
quick results for everyone entering a facility.
According to
George, though, that level of testing isn’t feasible at Aldersgate, and
she said the facility doesn’t have staff that are qualified to even
operate a molecular test. She said her facility has plenty of antigen
tests, but Lee said those tests won’t keep the virus out.
“This
virus targets (the elderly) like an Exocet missile,” Lee said. “We have
really been playing Rusian Roulette ... with the nursing homes and
assisted-living facilities when it comes to this pandemic.”
Lee isn’t against visitation, but he said there needs to be changes to save lives.
Mitzi McFatrich, executive director of Kansas Advocates for
Better Care, said banning visitation is problematic because residents
who are unable to see their loved ones have a lower quality of life.
Still,
McFatrich shares Lee’s concerns. She indicated nursing homes aren’t
much better prepared for the virus now than they were when the pandemic
began, and she doesn’t think there are preventative measures in place to
stop the virus from spreading through nursing homes, as it did in a
number of facilities nationwide at the outset of the pandemic.
“Do
we have anything in place that is going to prevent the spread of
COVID-19? Best I can tell, we do not,” McFatrich said. “There is not a
vaccine, not a treatment.”
McFatrich said wearing masks, testing
and social distancing are the best ways to prevent the spread of the
coronavirus, but there isn’t a uniform system in place, she said, for
long-term care facilities to track how much personal protective
equipment they have on hand or to determine whether they are adequately
staffed.
According to George, Aldersgate Village has been well
supported around the clock by state and local government, and she said
Aldersgate was even able to get additional PPE from Shawnee County on a
Sunday night.
Still, allowing visitation is tricky, she said, as
Aldersgate staff attempt to balance “the good of the patient versus the
good of the family.”
Lee said the level of infection in facilities will depend on how prepared they are when visitors are welcome again.
He anticipates some facilities may not be ready for visitation. Still, he said, residents need to see their loved ones.
“Families are desperate to get in there,” Lee said.
Just as the defund the police movement underscores the institutional
racism that cries out for fundamental change, the COVID-19 pandemic
ravaging nursing home residents underscores a deep-seated ageism
inherent in our institutional model of nursing home care. I believe it
is time to defund the institutional model and replace it with a
radically different model.
Today’s typical nursing home has never come close to meeting the
public’s desire for humane and dignified long-term care. Warehousing
large numbers of frail elders in hospital-like buildings with residents
in double or triple rooms along with staff turnover as high as 100%
unavoidably creates a high risk for resident safety and compromises
quality of care.
Nursing Homes in the Pandemic
Even before the pandemic,
82% of all nursing homes had infection prevention and control
deficiencies cited in one or more years from 2013-2017, according to the
U.S. Government Accountability Office. And 48% had such a deficiency in
multiple years.
The COVID-19 pandemic is a 9/11 moment for nursing home care.
Despite the $90 billion paid annually by Medicare and Medicaid to
nursing homes, and exacting regulatory requirements addressing quality
of care and quality of life for the nation’s 1.3 million nursing home
residents, we as a society have failed to keep frail elders safe — let alone in an environment that older adults look forward to residing in.
Pandemic data from the Centers for Medicare and Medicaid Services
indicate that, as of the end of May, over 32,000 nursing home residents
had died in the 88% of nursing homes that reported data. Other analyses
have reported nursing home resident and staff deaths represent 40% of
the nation’s COVID-19 deaths and in some areas, as high as 75%.
As a result, multiple recommendations for change have gained
attention. They include ensuring adequate personal protective equipment
in nursing homes; disaster plans that facilitate quarantining; more and
better trained staff and heightened monitoring and oversight of care.
But let’s be clear: These measures do little more than rearrange the deck chairs in a failing system.
The COVID-19 pandemic is a 9/11 moment for nursing home care and a
test of our ability to reimagine nursing home care that puts the “home”
into nursing homes.
The Green House Model
As the largest payor for nursing home care, Medicare and Medicaid
hold the key. Now is the time to change facility requirements to
gradually limit participation in the program only to facilities that
provide the following:
Small home-like facilities
Single rooms and bathrooms
A flattened, more flexible staff hierarchy with cross-trained staff
A culture focused first on residents’ goals, interests and preferences
Fortunately, there is already a model for this kind of facility: the nonprofit Green House Project created by Next Avenue Influencer in Aging Dr. Bill Thomas
in 2003. There are 300 Green House facilities nationally, each with 10
or 12 residents who have single rooms and private baths. Some call this
“the household model.”
In The Green House, facilities are designed around a living room with
a fireplace and an open kitchen where meals are prepared and shared.
The cross-trained staff, backed by nurses and doctors, engage with
residents, serving as nurse aides, cooks, cleaners and participants in
meals and social activities. Not surprisingly, Green House staff
turnover is far below that of traditional nursing homes.
Of most importance to policymakers, Green House Project homes have
been proven to have high resident, family and worker satisfaction;
better quality of care and quality of life than traditional nursing
homes; costs comparable to traditional nursing homes and, in the midst
of the pandemic, a much greater ability to prevent and contain illness.
Data collected in ongoing research has revealed only one resident
death as of May 31 in a sample of 1,862 residents in 178 Green House
homes providing skilled nursing.
As long as the nursing home industry can rely on the flow of federal
money for the current model of care, it has no financial incentive to
change, not even after the coronavirus catastrophe.
Change that flow, and a major cultural change in long-term care will follow.
The views contained in this article represent Charles Sabatino’s
opinions and should not be construed to be those of either the American
Bar Association or the Commission on Law and Aging unless adopted
pursuant to the bylaws of the Association.
A blind 94-year-old Chilliwack, B.C., woman is left confined for two weeks while bed bugs multiply on her mattress.
A 79-year-old woman in Viking, Alberta, dies of dehydration and a
urinary tract infection caused by remaining too long in unchanged wet
diapers.
A 63-year-old Brampton, Ontario, man is provided so little food and water that he has to be hospitalized for dehydration.
A 94-year-old woman in Dorval, Quebec, who has both Alzheimer’s and
dysphagia dies from choking on her food. No written incident report is
filed by the home where she resides.
If you presumed that these incidents relate to long-term care homes
being overwhelmed by the current coronavirus crisis, you can be
forgiven. The absolute horror stories emerging from Canada’s long-term
care facilities have focused our attention as never before on the
vulnerability of the residents that rely on these institutions.
But every one of these incidents came from media reports that predate
the pandemic. They reflect Canada’s system of care for the elderly and
people with disabilities in “normal” times, not times of crisis. In
worsening this system’s failures, the coronavirus crisis is opening our
eyes to realities that far too many Canadian families have long known
all too well.
In his response
to the gut-wrenching revelations that recently emerged at a Dorval
nursing home (the same one where the woman choked on her food), Quebec
premier François Legault stated that the situation “looks a lot like
major negligence.”
The negligence Legault referred to was that of the privately owned
company that ran this home. But there is a more important negligence to
consider: that of Canada’s entire political class.
Its reckless embrace of neoliberalism has for far too long left many
of Canada’s most vulnerable residents in conditions that can only be
described as shamefully unacceptable. Such conditions are the bitter
fruit of what happens when our newspaper editorial boards along with our
politicians prioritize austerity, privatization and corporate profits
over dignified care for vulnerable human beings.
The picture painted by all this
research is of a clear and obvious conflict of interest that
subordinates the safety of our loved ones to the profit-making
prerogatives of heartless corporations.
While our politicians can claim to be saddened over the tragedy that
is now unfolding in long-term care homes around the country, none should
claim to be surprised at this situation. Unions and organizations that
advocate for the various people that depend on long-term care have for
years decried the worsening conditions of these facilities. Many have
also been extremely clear about the central reason for these worsening
conditions — privatization.
Indeed, every one of the examples mentioned at the beginning of this
article occurred at one of Canada’s privately owned for-profit
facilities. While the number of for-profit care homes varies from
province to province, such facilities house 37 per cent of Canada’s
long-term beds.
The connection between private ownership and diminished standards of care has been documented in numerous studies and reports. One recent study from the peer-reviewed journal PLOS Medicine
found that for-profit facilities not only provided “inferior” care but
also were more likely to have been cited for serious deficiencies than
facilities making less profit.
Similarly, a recent report
from B.C.’s seniors advocate, Isobel Mackenzie, noted that for-profit
care homes failed to provide hundreds of thousands of the hours of care
for which they received government funding, while not-for-profit homes
significantly overdelivered in terms of hours of care. The picture
painted by all this research is of a clear and obvious conflict of
interest that subordinates the safety of our loved ones to the
profit-making prerogatives of heartless corporations.
While our politicians can claim to
be saddened over the tragedy that is now unfolding in long-term care
homes around the country, none should claim to be surprised at this
situation.
Thus far the solution being proposed by politicians and mainstream
media pundits alike is to establish tougher regulations. At best, this
transforms the problem into a game of government whack-a-mole. It
naively presumes that regulations can cause private corporations, whose
CEOs are hired and handsomely rewarded to deliver profits to
shareholders, to magically begin acting in the interest of ordinary
people.
We should know better.
We Canadians can be so smug about how superior our healthcare system
is compared to that of our U.S. neighbours. We wonder how it is that
Americans can’t see that the delivery of high-quality healthcare for all
is completely at odds with the profit-making interests of large
corporations.
However, if this crisis teaches us anything, it should be that when
it comes to the care of the most vulnerable Canadians, the politicians
we have been electing have been just as negligent about the consequences
associated with for-profit care as their American counterparts.
If we want to finally bring an end to the decades-long tragedy that
has been concentrated in the growing number of for-profit care homes, we
need to stop electing politicians unable or unwilling to see for-profit
care as the disaster it is. Until we can start electing governments
with the courage to make meaningful public investments and reverse the
pattern of privatization, many of us will continue to be left with no
choice but to trust the care of our loved ones to institutions that are
massively incentivized to neglect their needs.
Whether or not we have family members in need of long-term care, we should all see this situation as completely intolerable.
Why are some long-term care and retirement homes banning families from seeing their loved ones? Administrators say it's because they're being too aggressive. Families argue they're just fighting for better care.
SALT LAKE CITY — Utah as a whole is continuing to grow older, and
state administrators say a troubling trend has accompanied the
demographic shift.
They have received more and more complaints alleging abuse of vulnerable and elderly Utahns.
"It happens in facilities. It happens in their own home,"
said Nan Mendenhall, director of Utah Adult Protective Services. "It's
not discriminatory. It happens to anybody."
Utahns reported 5,325 instances of abuse to Mendenhall's
agency in 2017, a 40 percent increase from just three years earlier,
when it documented 3,030. Recent criminal cases have also drawn
attention to the misconduct. A former Clearfield nurse's aide is now serving a year in jail for punching and shoving two Alzheimer's patients after a camera captured some of the abuse.
The exploitation is not just physical and sexual, but
also financial. And while there are steps families can take to protect
loved ones, Utah's experts on aging say the Beehive State must do more
to prepare for its aging population.
Those over 65 years old now have outpaced children and
teens as the fastest-growing age group in Utah. State demographers
estimate the retirement-age share will doubleover the next 50 years to 1 in 5, according to a Januaryanalysisfrom the Kem C. Gardner Policy Institute.
The rate of those with Alzheimer's will grow even faster,
more than tripling in the same time frame to a total of 112,000, the
report estimates. The disease is one type of dementia, a decline in
mental function that can lead to memory loss and changes in personality
or reasoning skills. It has no cure, but drugs can ease symptoms.
"We tend to have a healthier population, which means that
people live longer," said Ronnie Daniel with the Utah chapter of the
Alzheimer's Association. "The single largest risk factor for getting
Alzheimer's and other related dementia is age."
His group worked with state health and licensing managers
to create a 2017 requirement for employees of long-term care facilities
to receive at least four hours of training on how to work with those
who have dementia in order to renew their licenses.
"We don't believe that's enough," he said, "but that's a good start."
Rob Ence, executive director of the governor's Commission
on Aging, said despite some progress, "we are still falling short where
we are today, let alone taking steps to be prepared for the future."
The groundwork he envisions ranges from more doctors
encouraging dance and exercise, which can help stave off Alzheimer's, to
more affordable housing for aging Utahns and incentives to draw more of
the workforce to care giving. Utah still must grow state programs to
investigate abuse and advocate for patients' rights, Ence said.
In 2017, nearly half of complaints to Adult Protective
Services alleged financial exploitation, Mendenhall said. She is now
urging lawmakers them to codify tougher penalties on those who transfer
an aging family member's deeds and property without permission.
Physical and sexual abuse claims account for 20 percent
of the total, but Mendenhall said they are often underreported,
especially when they occur in group settings.
"On the sexual side, the victims are targeted because
they have their cognitive ability of not being able to remember," she
said. Mendenhall declined to say whether her agency investigated Jason
Herald Knox, the Clearfield nurse's aide convicted of aggravated abuse
of a vulnerable adult who led his employer to believe he was taking
ongoing training even though his certification had expired.
Knox's victims had routine visitors, but predators will
typically opt to take advantage of those more isolated, Mendenhall said.
"If you don't have active eyes coming in to see your loved ones,
they're more likely to be abused."
Utah law requires anyone who suspects exploitation of a
vulnerable adult to tell either police or her agency, which creates
plans protect the victim from further abuse.
As the workload for the two dozen investigators across
Utah has grown, their budget has shrunk, Mendenhall noted. She is
seeking the money to add three more, a request she hopes lawmakers will
grant in a special session later this year
Some resources and tips from the experts:
• After a diagnosis, seek out a care strategy as soon as
possible so that your aging loved one can have a say in the plan. For
those wondering where to begins, the Alzheimer's Association runs a
24-hour hotline: (800)272-3900. Utah's area agencies on aging, mostly run by counties, also can help.
• Families shopping for a longterm care facility should
drop by at different times of day to observe interactions between staff
and residents, Mendenhall said. On planned visits, you're less likely to
spot telling interactions. A database operated by Medicare.gov issues report cards on nursing homes nationwide.
• When hiring someone to care for a loved one in their
own home, be sure to do a background check and call references,
preferably at agencies with a strong reputation.
• You can report abuse of a vulnerable adult in Utah by calling Adult Protective Services (800)371-7897 or online through the agency's website.
• Help is also available through the agency for family
members who become overwhelmed by a loved one's needs and would like
training on how to cope with the stress .
• Utah has a long-term care ombudsman,
plus several local liaisons, who advocate for the rights of those in
group settings when it comes to concerns from suspected criminal
behavior down to meal preferences.
A six-month investigation by KHN and PBS NewsHour
finds that older Americans are quietly killing themselves in nursing
homes, assisted living centers and adult care homes.
When Larry Anders moved into the Bay at Burlington nursing home in
late 2017, he wasn’t supposed to be there long. At 77, the stoic
Wisconsin machinist had just endured the death of his wife of 51 years
and a grim new diagnosis: throat cancer, stage 4.
His son and daughter expected him to stay two weeks, tops, before
going home to begin chemotherapy. From the start, they were alarmed by
the lack of care at the center, where, they said, staff seemed
indifferent, if not incompetent — failing to check on him promptly,
handing pills to a man who couldn’t swallow.
Anders never mentioned suicide to his children, who camped out day and night by his bedside to monitor his care.
But two days after Christmas, alone in his nursing home room, Anders killed himself. He didn’t leave a note.
The act stunned his family. His daughter, Lorie Juno, 50, was so
distressed that, a year later, she still refused to learn the details of
her father’s death. The official cause was asphyxiation.
“It’s sad he was feeling in such a desperate place in the end,” Juno said.
In a nation where suicide continues to climb, claiming more than 47,000 lives in 2017, such deaths among older adults — including the 2.2 million
who live in long-term care settings — are often overlooked. A six-month
investigation by Kaiser Health News and PBS NewsHour finds that older
Americans are quietly killing themselves in nursing homes, assisted
living centers and adult care homes.
Poor documentation makes it difficult to tell exactly how often such
deaths occur. But a KHN analysis of new data from the University of
Michigan suggests that hundreds of suicides by older adults each year —
nearly one per day — are related to long-term care. Thousands more
people may be at risk in those settings, where up to a third of
residents report suicidal thoughts, research shows.
Each suicide results from a unique blend of factors, of course. But
the fact that frail older Americans are managing to kill themselves in
what are supposed to be safe, supervised havens raises questions about
whether these facilities pay enough attention to risk factors like
mental health, physical decline and disconnectedness — and events such
as losing a spouse or leaving one’s home. More controversial is whether
older adults in those settings should be able to take their lives
through what some fiercely defend as “rational suicide.”
Tracking suicides in long-term care is difficult. No federal
regulations require reporting of such deaths and most states either
don’t count — or won’t divulge — how many people end their own lives in
those settings.
Briana Mezuk, an associate professor of epidemiology at the University of Michigan, found in 2015
that the rate of suicide in older adults in nursing homes in Virginia
was nearly the same as the rate in the general population, despite the
greater supervision the facilities provide.
In research they presented at the 2018 Gerontological Society of
America annual meeting, Mezuk’s team looked at nearly 50,000 suicides
among people 55 and older in the National Violent Death Reporting System
(NVDRS) from 2003 to 2015 in 27 states. They found that 2.2% of those
suicides were related to long-term care. The people who died were either
people living in or transitioning to long-term care, or caregivers of
people in those circumstances.
Briana Mezuk(Courtesy of University of Michigan School of Public Health)
KHN extrapolated the finding to the entire U.S., where 16,500
suicides were reported among people 55 and older in 2017, according to
federal figures. That suggests that at least 364 suicides a year occur
among people living in or moving to long-term care settings, or among
their caregivers. The numbers are likely higher, Mezuk said, since the
NVDRS data did not include such states as California and Florida, which
have large populations of elders living in long-term care sites.
But representatives of the long-term care industry point out that by any measure, such suicides are rare.
The deaths are “horrifically tragic” when they occur, said Dr. David
Gifford, of the American Health Care Association. But, he added, the
facilities offer “a very supervised environment,” and settings that
receive Medicare or Medicaid funding are required to assess and monitor
patients for suicidal behavior.
“I think the industry is pretty attuned to it and paying attention to
it,” Gifford said, noting that mental health issues among older adults
in general must be addressed. “I don’t see this data as pointing to a
problem in the facilities.”
KHN examined over 500 attempted and completed suicides in long-term
care settings from 2012 to 2017 by analyzing thousands of death records,
medical examiner reports, state inspections, court cases and incident
reports.
Even in supervised settings, records show, older people find ways to
end their own lives. Many used guns, sometimes in places where firearms
weren’t allowed or should have been securely stored. Others hanged
themselves, jumped from windows, overdosed on pills or suffocated
themselves with plastic bags. (The analysis did not examine medical
aid-in-dying, a rare and restricted method by which people who are
terminally ill and mentally competent can get a doctor’s prescription
for lethal drugs. That is legal only in seven states and the District of Columbia.)
Descriptions KHN unearthed in public records shed light on residents’
despair: Some told nursing home staff they were depressed or lonely;
some felt that their families had abandoned them or that they had
nothing to live for. Others said they had just lived long enough: “I am
too old to still be living,” one patient told staff. In some cases,
state inspectors found nursing homes to blame for failing to heed
suicidal warning signs or evicting patients who tried to kill
themselves.
A better understanding is crucial: Experts agree that late-life suicide is an under-recognized problem that is poised to grow.
By 2030, all baby boomers will be older than 65 and 1 in 5 U.S. residents will be of retirement age, according to census data. Of those who reach 65, two-thirds can expect to need some type of long-term care. And, for poorly understood reasons, that generation has had higher rates
of suicide at every stage, said Dr. Yeates Conwell, director of the
Office for Aging Research and Health Services at the University of
Rochester.
“The rise in rates in people in middle age is going to be carried with them into older adulthood,” he said.
Long-term care settings could be a critical place to intervene to
avert suicide — and to help people find meaning, purpose and quality of
life, Mezuk argued: “There’s so much more that can be done. It would be
hard for us to be doing less.”
‘In A Desperate Place’
In Wisconsin, Larry Anders’ children chose to speak publicly because they felt the nursing home failed their father.
Anders, a taciturn Army veteran, lived a low-key retirement in
Waukesha, outside of Milwaukee. He grew asparagus, watched “Wheel of
Fortune” with his wife, Lorna, in matching blue recliners and played the
slot machines at a Chinese restaurant.
Following the November 2017 death of his wife, and his throat cancer
diagnosis, he initially refused treatment, but then agreed to give it a
try.
Anders landed at the Bay at Burlington, 40 minutes from his home, the
closest facility his Medicare Advantage plan would cover. The first
day, Lorie Juno grew worried when no one came to greet her father after
the ambulance crew wheeled him to his room. The room had no hand
sanitizer and the sink had no hot water.
In his week in the Burlington, Wis., center, Anders wrestled with
anxiety and insomnia. Anders, who rarely complained, called his daughter
in a panic around 2 a.m. one day, saying that he couldn’t sleep and
that “they don’t know what the hell they’re doing here,” according to
Juno. When she called, staff assured her that Anders had just had a
“snack,” which she knew wasn’t true because he ate only through a
feeding tube.
His children scrambled to transfer him elsewhere, but they ran out of
time. On Dec. 27, Mike Anders, 48, woke up in an armchair next to his
father’s bed after spending the night. He left for his job as a
machinist between 5 and 6 a.m. At 6:40 a.m., Larry Anders was found dead
in his room.
“I firmly believe that had he had better care, it would’ve been a different ending,” Mike Anders said.
Research shows events like losing a spouse and a new cancer diagnosis put people at higher risk of suicide, but close monitoring requires resources that many facilities don’t have.
“It’s sad he was feeling in such a desperate place in the end,” says
Lorie Juno of her father, Larry Anders.(Darren Hauck for KHN)
Larry Anders, a machinist and an Army veteran, enjoyed growing
asparagus and playing slot machines.(Darren Hauck for KHN)
“I firmly believe that had he had better care, it would’ve
been a
different ending,” says Mike Anders of his father, Larry Anders. (Darren Hauck for KHN)
Nursing homes already struggle
to provide enough staffing for basic care. Assisted living centers that
promote independence and autonomy can miss warning signs of suicide
risk, experts warn.
In the weeks before and after Anders’ death, state inspectors found a
litany of problems at the facility, including staffing shortages. When
inspectors found a patient lying on the floor, they couldn’t locate any
staff in the unit to help.
Champion Care, the New York firm that runs the Bay at Burlington and
other Wisconsin nursing homes, noted that neither police nor state
health officials found staff at fault in Anders’ death.
Merely having a suicide on-site does not mean a nursing home broke
federal rules. But in some suicides KHN reviewed, nursing homes were
penalized for failing to meet requirements for federally funded
facilities, such as maintaining residents’ well-being, preventing
avoidable accidents and telling a patient’s doctor and family if they
are at risk of harm.
For example:
An 81-year-old architect fatally shot himself while his roommate was
nearby in their shared room in a Massachusetts nursing home in 2016.
The facility was fined $66,705.
A 95-year-old World War II pilot hanged himself in an Ohio nursing
home in 2016, six months after a previous attempt in the same location.
The facility was fined $42,575.
An 82-year-old former aircraft mechanic, who had a history of
suicidal ideation, suffocated himself with a plastic bag in a
Connecticut nursing home in 2015. The facility was fined $1,020.
Prevention needs to start long before these deaths occur, with
thorough screenings upon entry to the facilities and ongoing monitoring,
Conwell said. The main risk factors for senior suicide are what he
calls “the four D’s”: depression, debility, access to deadly means and
disconnectedness.
“Pretty much all of the factors that we associate with completed
suicide risk are going to be concentrated in long-term care,” Conwell
said.
Most seniors who choose to end their lives don’t talk about it in advance, and they often die on the first attempt, he said.
‘I Choose This “Shortcut”’
That was the case for the Rev. Milton P. Andrews Jr., a former
Seattle pastor, who “gave no hint” he wanted to end his life six years
ago at a Wesley Homes retirement center in nearby Des Moines, Wash.
Neither his son, Paul Andrews, nor the staff at the center had any
suspicions, they said.
“My father was an infinitely deliberate person,” said Paul Andrews,
69, a retired Seattle journalist. “There’s no way once he decided his
own fate that he was going to give a clue about it, since that would
have defeated the whole plan.”
At 90, the Methodist minister and human rights activist had a long
history of making what he saw as unpopular but morally necessary
decisions. He drew controversy in the pulpit in the 1950s for inviting
African Americans into his Seattle sanctuary. He opposed the Vietnam War
and was arrested for protesting nuclear armament. His daughter was once
called a “pinko” because Andrews demanded equal time on a local radio
station to rebut a conservative broadcaster.
In 2013, facing a possible second bout of congestive heart failure
and the decline of his beloved wife, Ruth, who had dementia, Andrews
made his final decision. On Valentine’s Day, he took a handful of
sleeping pills, pulled a plastic bag over his head and died.
Milton Andrews wrote a goodbye note on the cover of his laptop computer in bold, black marker.
“Fare-well! I am ready to die! I choose this ‘shortcut,’” it read in
part. “I love you all, and do not wish a long, protracted death — with
my loved ones waiting for me to die.”
Retired
Seattle minister Milt Andrews, 90, ended his life on
Valentine’s Day
2013 at his assisted living center, leaving behind
a note written in
black marker on the cover of his laptop computer. (Dan DeLong for KHN)
Christine Tremain, a spokeswoman for Wesley Homes, said Andrews’
death has been the only suicide reported in her 18 years at the center.
“Elder suicide is an issue that we take seriously and work to prevent
through the formal and informal support systems that we have in place,”
she said.
At first, Paul Andrews said he was shocked, devastated and even angry about his dad’s death. Now, he just misses him.
“I always feel like he was gone too soon, even though I don’t think he felt like that at all,” he said.
Andrews has come to believe that elderly people should be able to decide when they’re ready to die.
“I think it’s a human right,” he said. “If you go out when you’re
still functioning and still have the ability to choose, that may be the
best way to do it and not leave it to other people to decide.”
Paul
Andrews was shocked when his father, the Rev. Milton P.
Andrews Jr.,
died by suicide at a Seattle-area assisted living
center in 2013. He has
since come to believe that elderly people
should be able to decide when
they’re ready to die. (Dan DeLong for KHN)
That’s a view shared by Dena Davis, 72, a bioethics professor at
Lehigh University in Pennsylvania. Suicide “could be a rational choice
for anyone of any age if they feel that the benefits of their continued
life are no longer worth it,” she said.
“The older you get, the more of your life you’ve already lived —
hopefully, enjoyed — the less of it there is to look forward to,” said
Davis, who has publicly discussed her desire to end her own life rather
than die of dementia, as her mother did.
But Conwell, a leading geriatric psychiatrist, finds the idea of
rational suicide by older Americans “really troublesome.” “We have this
ageist society, and it’s awfully easy to hand over the message that
they’re all doing us a favor,” he said.
‘So Preventable’
When older adults struggle with mental illness, families often turn to long-term care to keep them safe.
A jovial social worker who loved to dance, Ellen Karpas fell into a
catatonic depression after losing her job at age 74 and was diagnosed
with bipolar disorder. Concerned that she was “dwindling away” at home,
losing weight and skipping medications, her children persuaded her to
move to an assisted living facility in Minneapolis in 2017.
Karpas enjoyed watching the sunset from the large, fourth-story
window of her room at Ebenezer Loren on Park. But she had trouble
adjusting to the sterile environment, according to son Timothy Schultz,
52.
“I do not want to live here for the rest of my life,” she told him.
Ellen
Karpas (second from left) and four of her five children attend a St.
Patrick’s Day parade in 2016. The following year, the 79-year-old died
by suicide at an assisted living facility in Minneapolis.(Courtesy of Timothy Schultz)
On Oct. 4, 2017, less than a month after she moved in, Karpas was
unusually irritable during a visit, her daughter, Sandy Pahlen, 54,
recalled. Pahlen and her husband left the room briefly. When they
returned, Karpas was gone. Pahlen looked out an open window and saw her
mother on the ground below.
Karpas, 79, was declared dead at the scene.
Schultz said he thinks the death was premeditated, because his mother
took off her eyeglasses and pulled a stool next to the window. Escaping
was easy: She just had to retract a screen that rolled up like a roller
blind and open the window with a hand crank.
Pahlen said she believes medication mismanagement — the staff’s
failure to give Karpas her regular mood stabilizer pills — contributed
to her suicide. But a state health department investigation found
staffers were not at fault in the death. Eric Schubert, a spokesman for
Fairview Health Services, which owns the facility, called Karpas’ death
“very tragic” but said he could not comment further because the family
has hired a lawyer. Their lawyer, Joel Smith, said the family plans to
sue the facility and may pursue state legislation to make windows
suicide-proof at similar places.
“Where do I even begin to heal from something that is so painful,
because it was so preventable?” said Raven Baker, Karpas’ 26-year-old
granddaughter.
Nationwide, about half of people who die by suicide had a known
mental health condition, according to the Centers for Disease Control
and Prevention. Mental health is a significant concern in U.S. nursing
homes: Nearly half of residents are diagnosed with depression, according
to a 2013 CDC report.
That often leads caregivers, families and patients themselves to
believe that depression is inevitable, so they dismiss or ignore signs
of suicide risk, said Conwell.
“Older adulthood is not a time when it’s normal to feel depressed.
It’s not a time when it’s normal to feel as if your life has no
meaning,” he said. “If those things are coming across, that should send
up a red flag.”
Solutions
Roland K. Tiedemann was 89 when he took his life on Jan. 22, 2018, at a
Wenatchee, Wash., assisted living center. The action shocked his
daughter, Jane Davis, and left a void in the life of her daughter, Jayna, shown here at age 7½ in December 2014.(Courtesy of Jane Davis)
Still, not everyone with depression is suicidal, and some who are
suicidal don’t appear depressed, said Julie Rickard, a psychologist in
Wenatchee, Wash., who founded a regional suicide prevention coalition in
2012. She’s launching one of the nation’s few pilot projects to train
staff and engage fellow residents to address suicides in long-term care.
In the past 18 months, three suicides occurred at assisted living
centers in the rural central Washington community of 50,000 people. That
included Roland K. Tiedemann, 89, who jumped from the fourth-story
window of a local center on Jan. 22, 2018.
“He was very methodical. He had it planned out,” Rickard said. “Had
the staff been trained, they would have been able to prevent it. Because
none of them had been trained, they missed all the signs.”
Tiedemann, known as “Dutch,” lived there with his wife, Mary, who has
dementia. The couple had nearly exhausted resources to pay for their
care and faced moving to a new center, said their daughter, Jane Davis,
45, of Steamboat Springs, Colo. Transitions into or out of long-term
care can be a key time for suicide risk, data shows.
After Tiedemann’s death, Davis moved her mother to a different
facility in a nearby city. Mary Tiedemann, whose dementia is worse,
doesn’t understand that her husband died, Davis said. “At first I would
tell her. And I was telling her over and over,” she said. “Now I just
tell her he’s hiking.”
At the facility where Tiedemann died, Rickard met with the residents, including many who reported thoughts of suicide.
Julie Rickard (Frank Carlson, PBS NewsHour)
“The room was filled with people who wanted to die,” she said. “These
people came to me to say: ‘Tell me why I should still live.’”
Know What To Do
Families of people living in or transitioning to long-term care
receive little advice about signs of suicide risk – or ways to prevent
it. Here are steps to keep your loved one safe, based on interviews with
suicide prevention researchers.
Know what’s normal. Depression and thoughts of
suicide are not an inevitable part of aging or of living in long-term
care. Consider treatment for depression if the person experiences
trouble sleeping, muscle aches, headache, changes in appetite or weight,
restlessness or agitation.
Don’t be afraid to ask about it. Asking someone
about suicidal thoughts is unlikely to cause them to act on them. Start
the conversation. Ask about the facilities, the activities, the food.
Ask what would help them look forward to waking up or want to be alive.
If you have concerns, speak up. Let staff members
know if your loved one talks about wanting to die, or about actual plans
to end their lives. Work with the team collaboratively to discuss
solutions.
Ask about suicide protocols. Facilities should have a
plan for assessing, monitoring and preventing suicide risk. What’s the
protocol if someone is actively or passively suicidal? Fifteen-minute
checks? Close observation? Hospitalization? What’s the readmission
policy?
Plan for safety. If suicide is a concern, restrict
access to lethal means, including weapons, medications, chemicals, cords
and plastic bags. Ensure that windows, stairwells and exits are secure.
Most suicide prevention funding targets young or middle-aged people,
in part because those groups have so many years ahead of them. But it’s
also because of ageist attitudes that suggest such investments and
interventions are not as necessary for older adults, said Jerry Reed, a nationally recognized suicide expert with the nonprofit Education Development Center.
“Life at 80 is just as possible as life at 18,” Reed said. “Our
suicide prevention strategies need to evolve. If they don’t, we’re going
to be losing people we don’t need to lose.”
Even when there are clear indications of risk, there’s no consensus
on the most effective way to respond. The most common responses —
checking patients every 15 minutes, close observation, referring
patients to psychiatric hospitals — may not be effective and may even be
harmful, research shows.
But intervening can make a difference, said Eleanor Feldman Barbera, a
New York psychologist who works in long-term care settings.
She recalled a 98-year-old woman who entered a local nursing home
last year after suffering several falls. The transition from the home
she shared with her elderly brother was difficult. When the woman
developed a urinary tract infection, her condition worsened. Anxious and
depressed, she told an aide she wanted to hurt herself with a knife.
She was referred for psychological services and improved. Weeks later,
after a transfer to a new unit, she was found in her room with the cord
of a call bell around her neck.
After a brief hospitalization, she returned to the nursing home and
was surrounded by increased care: a referral to a psychiatrist, extra
oversight by aides and social workers, regular calls from her brother.
During weekly counseling sessions, the woman now reports she feels
better. Barbera considers it a victory.
“She enjoys the music. She hangs out with peers. She watches what’s
going on,” Barbera said. “She’s 99 now — and she’s looking toward 100.”
If you or someone you know has talked about contemplating
suicide, call the National Suicide Prevention Lifeline at
1-800-273-8255, or use the online Lifeline Crisis Chat, both available 24 hours a day, seven days a week.
People 60 and older can call the Institute on Aging’s 24-hour, toll-free Friendship Line at 800-971-0016. IOA also makes ongoing outreach calls to lonely older adults.
