It helps control the residents, and institutions are rarely punished.
A year and a half ago in a Texas nursing home, I met
an 84-year-old resident with dementia named Felipa Natividad. Her
sister, Aurora Suarez, told me that the staff dosed Natividad with
Haldol, an antipsychotic drug, to ease the burden of bathing her. “They
give my sister medication to sedate her on the days of her shower:
Monday, Wednesday, Friday,” Suarez said. “They give her so much she
sleeps through the lunch hour and supper.” A review of Natividad’s
medical chart confirmed the schedule.
Suarez
said she had given her consent to use the drugs because she feared that
the staff would not bathe her sister enough if she refused. But when
Suarez saw the effect they had, she had second thoughts. She expressed
them to the nursing home, but Natividad was taken off the antipsychotics
only after she was placed in hospice care. She died a few months after
my interview. Her family, seeing her in a reduced state and unable to
communicate, wondered whether the drugs had compounded the losses
associated with dementia; Suarez thought they contributed to her
sister’s decline. “She gets no nourishment,” she told me not long before
Natividad died.
The use of antipsychotic drugs
as chemical restraints — for staff convenience or to “discipline” a
resident — has a long history in nursing homes. In 1975, the Senate
released a
report,
“Drugs in Nursing Homes: Misuse, High Costs, and Kickbacks,”
documenting some of the same trends we still see, more than 40 years
later. In the past decade, many manufacturers of antipsychotic drugs
have faced
civil and
criminal penalties
for misbranding the medications to promote them as appropriate for
treating older people with dementia. For more than a decade, the Food
and Drug Administration has required manufacturers to place the
strongest caution, known as a “black box warning,” on the packaging to
advise against the medicines’ use in these patients; such drugs almost
double the
risk of death for
them and have never been approved as
safe or
effective
for treating symptoms of dementia. Despite the warning, nursing homes
still often administer antipsychotic drugs in this manner, sometimes
without seeking informed consent first, in
violation of
federal regulations and
human rights norms.
Last year, I visited more than 100 nursing homes
across six states as part of Human Rights Watch research on the abuse of
antipsychotic drugs in such facilities. Based on government data,
we estimate
that in an average week, more than 179,000 older people in nursing
homes are given antipsychotic drugs without an appropriate diagnosis.
The powerful medications were developed to treat schizophrenia, but
staff
most commonly administer them to older people with dementia. Too often, nursing homes use the antipsychotics for their
sedative effects rather than to treat a medical problem. It’s true that the prevalence of antipsychotic drugs has declined in recent years, from
1 in 4 nursing home residents without an approved diagnosis in 2012 to 1 in 6 today,
but that falsely suggests that a longtime wrong is being righted.
Government enforcement of regulations prohibiting the use of the drugs
as a chemical restraint or without informed consent remains weak. What’s
more, two Trump administration decisions threaten the progress made in
curbing the abuse.
These powerful drugs are misused for a variety of
reasons,
including a misperception by nursing home staff that the medications
can help people with dementia; a lack of awareness of their dangers,
despite the black box warnings; lack of training in dementia care; and,
perhaps most significant, to compensate for understaffing. Nursing homes
have been exaggerating levels of nursing and caretaking staff for
years, according to an
analysis of federal data by Kaiser Health News.
To
understand the human toll of the misuse of antipsychotics, in my visits
to the nursing homes I interviewed more than 300 people — residents,
their families, staff, ombudsmen and doctors, as well as researchers and
regulators. In most cases, I did not use their names in my
report
because they cited a fear of retaliation for speaking openly to me.
Human Rights Watch did not identify the individual facilities in its
report because the abuse is so pervasive in the industry, and not
identifying nursing homes persuaded some staffers to speak with me.
Further, the goal was not to expose particular private actors so much as
to pressure government officials to enforce minimum health and safety
standards for all providers.
I found that too often, antipsychotic drugs are administered in harmful,
avoidable ways and without the appropriate consent. They are used to
control people. Nursing home residents and their family members
repeatedly told me they were given these medicines without their
knowledge, without awareness of the risks or over their objections.
Staff members frankly admitted giving residents these medicines for
their own convenience, with some saying they were not aware of an
informed-consent policy. Nursing facility staff, pharmacists and medical
directors described how doctors commonly prescribed the medications at
the request of nursing staff, without even seeing the patients.
Nursing homes turn to antipsychotic drugs — among other classes of psychotropic medications — because dementia is
associated with agitation, irritability, aggression, delusions, wandering, disinhibition and anxiety. While such
symptoms
are frightening for the people experiencing them and challenging for
their caregivers, institutional or otherwise, antipsychotic drugs have
not been found to be effective at managing them. In a small number of
particularly complex cases, antipsychotic drugs may be appropriate as a
last resort. But that is a far cry from how they are used. The American
Psychiatric Association concludes that the drugs offer “at best small”
potential benefits (such as minimizing the risk of self-harm in people
with extreme agitation), while “on the whole, there is consistent
evidence that antipsychotics are associated with clinically significant
adverse effects, including mortality.”
On paper, federal
regulations
say that residents have the right to be fully informed of their
treatment and to refuse treatment, which should amount to a right to
informed consent. But nursing facilities widely ignore the rules, partly
because they are rarely held accountable. Reviewing government data
from 2014 through mid-2017, Human Rights Watch found that in
97 percent of
citations for violations related to antipsychotic drugs, the incidents
were determined to have caused “no actual harm” to residents. As a
result, in almost no cases did the government impose financial
penalties, which correspond to the severity of harm caused by the
noncompliance. The prospect of enforcement actions, and the rare
sanctions issued, unsurprisingly had little deterrent effect, our
analysis found. Nursing homes cited for antipsychotic-drug-related
issues did not reduce their rates of drug use any more than facilities
not cited.
The way nursing homes obtain or
define “informed consent” can also be a factor in the drugs’ misuse.
“The use of specific medicines, particularly for somebody with dementia,
who lacks the capacity to consent themselves, should require informed
consent from their legal representative,” says Jonathan Evans, a former
president of the American Medical Directors Association. “But in
practice that seldom happens. Not just for that medicine but for any
medicine.”
The former administrator of a
nursing home in Kansas, who asked to remain anonymous, said: “The
facility usually gets informed consent like this: They call you up. They
say: ‘X, Y and Z is happening with your mom. This is going to help
her.’ Black box warning? It’s best just not to read that. The risks?
They gloss over them. They say, ‘That only happens once in a while, and
we’ll look for problems.’ We sell it. And, by the way, we already
started them on it.”
Despite
the limited threat of penalties, many nursing homes have reduced
inappropriate use of the drugs in recent years anyway, in response to
increased public pressure. By 2012,
congressional outrage over the widespread misuse of medications, costing
hundreds of millions of Medicare dollars annually, had motivated the Centers for Medicare and Medicaid Services (CMS) to create the
National Partnership to Improve Dementia Care in Nursing Homes
. While the partnership is only a voluntary initiative offering
educational support to train providers, the increased attention has been
associated with the reduction in misuse. But it is hard to celebrate
the decline when the government elects not to rigorously use the tools
it has to protect Americans in nursing homes from irreversible harm.
What’s
more, the national reduction may be misleading — and it may not last.
First, there’s been a notable uptick in the diagnosis of schizophrenia
(a disease that typically develops before age 30) in predominantly
elderly nursing home populations. This increase corresponds to the
rising pressure on facilities to reduce off-label antipsychotic drug
use. There’s no proven link, but the
trend does
suggest
that some homes seek false diagnoses to avoid red flags with the use of
these medications. A second concern, recognized by CMS, is that nursing
homes are simply replacing this closely watched class of psychotropic
medication with other types of sedating drugs with similar health risks.
Meanwhile, in response to an industry
request, the Trump administration in July 2017 changed
its guidance
on financial penalties, limiting the instances when inspectors can
assess the heaviest fines. The guidance also favors one-time sanctions
for harmful noncompliance with the law, rather than a per-day sanction
that corresponds to the number of days the harm persists. As a result,
in many cases facilities face less-significant consequences for harming
residents than they used to. And last
November
, CMS imposed an 18-month moratorium on Obama-era revisions to some
regulations — not updated since 1991 — intended in part to protect
residents whose psychotropic medications are prescribed on an “as
needed” basis. While it is unclear if those new protections will come
into force, it is abundantly clear that this administration’s
deregulatory scheme, which it calls “
Patients Over Paperwork,” reduces oversight and enforcement in an already dangerously underpoliced industry.
Karla Benkula,
daughter of a 75-year-old woman in Kansas, said that when the nursing
facility began giving her mother an antipsychotic drug, her mother
“would just sit there like this. No personality. Just a zombie.” Laurel
Cline, the daughter of an 88-year-old woman in a California nursing
home, said she thought the facility used antipsychotic medication to
silence people whose symptoms disturbed the staff. Cline said it was
obvious that her mother had physiological conditions requiring medical
attention. “She would be sitting there, slumped over, mucus everywhere. I
would go over and say, ‘She’s sick.’ ” But Cline’s mother wasn’t able
to advocate for herself, and Cline had to intervene to demand
appropriate medical care for a urinary tract infection, pneumonia and a
pulmonary embolism, she said.
“Dementia’s
already so hard,” said Ashley Plummer, a licensed practical nurse who
works in a Kansas nursing home. “But on top of that, throw [on] a few
Seroquels [a common antipsychotic drug], and then you’re just drooling. I
mean, it’s taking away even your right to be upset about your disease
process. It’s taking away your right to mourn what you’re going
through.”
In my interviews, it was disturbing how frequently
staff justified administering antipsychotic drugs for “behaviors,” a
disconcerting term suggesting that residents could, and should, avoid
acting in a disruptive way. A social worker in Texas who used to work in
a nursing facility said the underlying issue is that “the nursing homes
don’t want behaviors. They want docile.”
Many
nursing home staff spoke to me about using antipsychotics to control
residents as if it were a perfectly acceptable practice. Others told me
that they had become aware that antipsychotic drugs were frequently
misused only after the facility’s administration or corporate owners
decided to cut down on their use. “It used to be like a death prison
here,” a nursing director in a Kansas nursing home told me. “Half our
residents were on antipsychotics. Only 10 percent of our residents have a
mental illness.” Senior staff at the facility led an effort to reduce
the antipsychotic drug rate after receiving financial penalties for
administering unnecessary medications and after pressure from the
chain’s owners. Another nurse in Kansas said: “We were at 55 percent
antipsychotic drug rate before. Now we’re down to only people with a
diagnosis [for which the FDA has approved the medications] on the drugs.
They have a better quality of life because they’re not sedated.”
Nursing homes, a mostly
for-profit
industry, control most aspects of their residents’ lives. Presumably,
providers would be more inclined to meet minimum health and safety
standards if it cost them dearly not to do so. “In this industry, there
is a real
cost-benefit
analysis,” one long-term-care consultant told me. “If the fine will be
$100,000, then they’ll hire the three nurse aides who will cost them
about the same amount.”
Antipsychotic drugs may
be an appropriate treatment for some people with dementia in nursing
homes, but determining that requires a doctor and an informed patient
(or proxy). And once told of the significant risks, unlikely benefits
and possible alternative treatments — such as behavioral therapy,
adjusting routine and environment, or alleviating the source of
underlying loneliness, pain, boredom or fear — many people would
probably reject the drugs. As one long-term-care pharmacist in Kansas
said: “I don’t think antipsychotic drugs are presented well to the
family in informed-consent conversations. Because if it were, they’d all
reject it.”
An 81-year-old man in a Texas
nursing home put it this way to me: “Too many times I’m given too many
pills. I can’t even talk. I have a thick tongue when they do that. I ask
them not to [give me the antipsychotic drugs]. When I say that, they
threaten to remove me from the home. They get me so I can’t think. I
don’t want anything to make me change the person I am.”
Full Article & Source:
Why are nursing homes drugging dementia patients without their consent?
