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.
By Melissa Bailey and JoNel
Aleccia APRIL 9, 2019
(Darren Hauck for KHN)
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.
If You Need Help
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.
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.
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-thirdscan 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.
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.”
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.”
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.
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
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.
“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.
Melissa
Bailey: mbailey@kff.org,
@mmbaily
JoNel Aleccia: jaleccia@kff.org, @JoNel_Aleccia
https://khn.org/news/suicide-seniors-long-term-care-nursing-homes/?utm_campaign=KFF-2019-The-Latest&utm_source=hs_email&utm_medium=email&utm_content=71639440&_hsenc=p2ANqtz--nOOXOVy1z9xArn8D85UME-QV2UqtvHE0YfwamY1O7sMoypjC826QZAK5R-QAcM8A6TkAa_L9vIPzlPIOql__CV6V0og&_hsmi=71639440
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