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By Judith Graham
(Kaiser Health News)Families
are beset by fear and anxiety as Covid-19 makes inroads at nursing
homes across the country, threatening the lives of vulnerable older
adults.
Alarmingly
more than 10,000 residents and staff at long-term care facilities have
died from Covid infections, according to an April 23 analysis of state data by the Kaiser Family Foundation.
But
often facilities won't disclose how many residents and employees are
infected with the coronavirus that causes the disease, citing privacy
considerations. Unable to visit, families can't see for themselves how
loved ones are doing.
Are people getting enough to eat? How
are their spirits? Are they stable physically or declining? Are staff
shortages developing as health aides become sick?
Perhaps
most pressing, does a loved one have Covid symptoms? Is testing
available? If infected, is he or she getting adequate care?
"This
is the problem we're all facing right now: If you have family in these
facilities, how do you know they're in danger or not?" Jorge Zamanillo told the Miami Herald after his 90-year-old mother, Rosa, died of Covid-19 only days after staffers said she was "fine."
In recent weeks, amid mounting concern, states including California, Connecticut, Illinois, Massachusetts and New York
began releasing data about cases and deaths in individual nursing
homes. (The data varies by state.) And the Centers for Medicare &
Medicaid Services said it would require homes to report cases to the
Centers for Disease Control and Prevention and to notify residents and
families. (Previously, facilities were required to report only to
states.)
Families' worst fears have been expressed in recent headlines, including a New York Times story that described "body bags piled up" behind a New Jersey nursing home where 70 residents had perished. Another investigation called nursing homes "death pits"
and reported that at least 7,000 residents across the nation had died
of Covid-19 — about 20% of all deaths reported at the time, April 17.
What
can families do? I asked nearly a dozen long-term care advocates and
experts for advice. They cautioned that the problems — lapses in
infection control and inadequate staffing foremost among them — require a
strong response from regulators and lawmakers.
"The
awful truth is families have no control over what's happening and not
nearly enough is being done to keep people safe," said Michael Dark, a
staff attorney at California Advocates for Nursing Home Reform.
Still, experts had several suggestions that may help:
Stay in touch
With
virtually all visitors barred from nursing homes since mid-March,
frequent contact with loved ones via telephone calls or video visits has
become even more important. In addition to providing much-needed
emotional support, it signals to staffers that family members are
vigilant.
"When a facility knows
someone is watching, those residents get better care," said Daniel Ross,
senior staff attorney at Mobilization for Justice, a legal aid agency
in New York City. "Obviously, the ban of visitors is a real problem, but
it doesn't make family oversight impossible."
If a resident has difficulty initiating
contact (this can be true for people who have poor fine-motor
coordination, impaired eyesight or hearing, or dementia), he or she will
need help from an aide. That can be problematic, though, with staff
shortages and other tasks being given higher priority.
Scheduling
a time for a call, a video chat or a "window visit" may make it easier,
suggested Mairead Painter, Connecticut's long-term care ombudsman.
Advocacy group AARP is pressing for Congress
to require nursing homes to offer video visitation and to provide
federal funding for the needed technologies. If you can afford to do so,
buy a tablet for your loved one or organize a group of families to buy
several.
Band together
More
than likely, other families have similar concerns and need for
information. Reach out through email chains or telephone trees,
suggested Richard Mollot, executive director of the Long Term Care
Community Coalition in New York City.
Ask
your nursing home administrator to update families weekly through a
conference call or Zoom video chat. Explain that families will probably
call less often with repetitive questions if communication is
coordinated.
Many nursing homes have family councils
that advocate for residents, and they're potentially valuable conduits
for support and information. Your long-term care ombudsman or
administrator can tell you if a council exists at your facility.
Working with a group can reduce the fear that complaining will provoke retaliation — a common concern among families.
"It's
one thing to hear 'Mrs. Jones' daughter is making a big deal of this'
and another to hear that families of 'everyone on the second floor have
noted there's no staff there,'" Ross said.
Contact ombudsmen
Every
state has a long-term care ombudsman responsible for advocating for
nursing home residents, addressing complaints and trying to solve
problems. While these experts currently are not allowed to visit
facilities, they're working at a distance in this time of crisis. To
find your ombudsman, go to The National Consumer Voice for Quality Long-Term Care's site.
Twice a week, Painter holds an hourlong question-and-answer session on the Connecticut Long-Term Care Ombudsman Program's Facebook page.
Among dozens of questions that people asked last week: What kind of
communication can I expect when a family member is Covid-positive and in
isolation? What's the protocol for testing, and are homes out of test
kits? Could families get a robocall if a resident died?
One
person wondered whether installing cameras in residents' rooms were an
option. This practice is legal in eight states, but facilities may
consider this elsewhere on a case-by-case basis. A fact sheet from The National Consumer Voice for Quality Long-Term Care lays out the pros and cons.
"Most
of what we do is trying to work out better communication," Painter
said. "When there are staffing issues, as there are now, that's the
first thing that falls off."
Lodge a complaint
Usually,
Painter advises families to take concerns to a nurse or administrator
rather than stew in silence. "Tell the story of what's going on with the
resident," she said. "Identify exactly what the person's needs are and
why they need to be addressed."
If
you think a family member is being ignored, talk to the director of
nurses and ask for a care plan meeting. "Whenever there's a change in
someone's condition, there's a requirement that a care plan meeting be
convened, and that remains in effect," said Eric Carlson, a directing
attorney with Justice in Aging, a legal advocacy organization.
If
that doesn't work, go "up the facility's chain of command" and contact
the corporate office or board of directors, said Robyn Grant, director
of public policy and advocacy at The National Consumer Voice for Quality
Long-Term Care.
If you're getting nowhere, file a complaint with the agency that oversees nursing homes in your state. (You can refer to this directory
from the Centers for Medicare & Medicaid Services, the federal
agency that oversees nursing homes.) This is a formality at the moment,
since the Centers for Medicare & Medicaid Services has temporarily
released agencies from the obligation to investigate most complaints.
Still, "there may come a day when you'll want a written record of this
kind," Dark advised.
Complaints
that are getting attention from regulators involve "immediate jeopardy":
the prospect of serious harm, injury, impairment or death to a
resident. "If you believe your concern rises to that level, make sure to
indicate that," The National Consumer Voice for Quality Long-Term Care advised.
Also,
contact local, state and national public officials and insist they
provide Covid-19 tests and personal protective equipment to nursing
homes. "Calls, letters — the lives of your loved ones depend on it,"
said Dr. Michael Wasserman, president of the California Association of
Long Term Care Medicine.
Bring a relative home
Some
nursing homes are asking families to take loved ones out of their
facilities and bring them home. Every day, all day, Dark said, he gets
calls from California families in this situation who are distraught and
terrified.
Families
need to think through these decisions carefully, said Dr. Joanne Lynn,
policy analyst of the program to improve eldercare at Altarum Institute,
a research organization. What if their loved one becomes ill? Will they
be able to provide care? If their relative has dementia or serious
disabilities, can they handle the demands such conditions entail?
Researchers in Ottawa, Canada, have developed a useful decision aid for families, available from The Ottawa Hospital Research Institute. (Americans can ignore the Canada-specific information.)
At
the very least, "get plans in place in case your relative has a bad
[Covid-19] case. People can go from stable to serious illness within
hours in many cases," Lynn said.
This
involves updating advance directives, including whether your loved one
would want cardiopulmonary resuscitation, mechanical ventilation,
transfer to the hospital in the event of a life-threatening health
crisis or hospice care, should that be indicated.
Full Article & Source:
Banned from nursing homes, families need to know if their loves ones are safe
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