By Judith Graham September
7, 2017
A few weeks ago, Kathy Brandt’s 86-year-old
mother was hospitalized in Florida after a fall. After rushing to her side,
Brandt asked for a consult with a palliative care nurse.
“I wanted someone to make sure my mother was
on the right medications,” Brandt said.
For all her expertise — Brandt
advises end-of-life organizations across the country — she was
taken aback when the nurse suggested hospice care for her mother, who has
advanced chronic obstructive pulmonary disease, kidney disease and a rapid,
irregular heartbeat.
“I was like — really?” Brandt remembered
saying, struggling with shock.
It’s a common reaction. Although hospices now
serve more than 1.4 million people a year, this specialized type of care, meant
for people with six months or less to live, continues to evoke resistance, fear
and misunderstanding.
“The biggest misperception about hospice is
that it’s ‘brink-of-death care,’” said Patricia Mehnert, a longtime hospice
nurse and interim chief executive officer of TRU
Community Care, the first hospice in Colorado.
In fact, hospice care often makes a
considerable difference for those with months to live. “When someone is further
out from death, we can really focus on enhancing their quality of life,” said
Rachel Behrendt, senior vice president of Hospice of the Valley,
which serves the Phoenix metropolitan area.
New research confirms
that hospice patients report better pain control, more satisfaction with their
care and fewer deaths in the hospital or intensive care units than other people
with similarly short life expectancies.
What should seniors and their families, the
largest users of hospice care, expect? It’s fairly well understood that
patients forgo curative therapies in favor of comfort care when they enter
hospice. Here are additional features:
Four Levels Of Care
Hospice providers are required to offer
routine care in patients’ homes (this includes seniors who reside in assisted
living or nursing homes); continuous care at home for people with
out-of-control symptoms such as pain or breathing problems; inpatient respite
for families that need a break from caring for a loved one; and general
inpatient care for medical crises that can’t be handled in any other setting.
With continuous care, a nurse must be on-site
in the home for at least eight hours a day, helping to bring symptoms under
control. Usually, this will happen in one to three days. Respite care has a
maximum limit of five days.
Some hospices have their own general inpatient
facilities and “it’s a common misconception that patients are sent to inpatient
hospice to die,” said Jean Cohn, clinical manager at Montgomery Hospice’s inpatient facility,
Casey House. “In fact, we’re frequently fine-tuning patients’ regimens in
inpatient hospice and sending them back home.”
Intermittent Care At Home
Routine care at home is by far the most common
service, accounting for about 94 percent of hospice care, according to
the latest report from
the National Hospice and Palliative Care Organization.
While services vary depending on a patient’s
needs, home care typically involves at least one weekly visit from a nurse and
a couple of visits from aides for up to 90 minutes. Also, a volunteer may
visit, if a patient and family so choose, and social workers and chaplains are
available to address practical and spiritual concerns.
Hospices will provide all medications needed
to address the underlying illness that is expected to cause the patient’s
death, as well as medical equipment such as hospital beds, commodes,
wheelchairs, walkers and oxygen. Typically, there is no charge for such gear,
although a copay of up to $5 per prescription is allowed.
What families and patients often don’t
realize: Hospice staff will not be in the home every day, around the clock.
“Many people think that hospice will be there all the time, but it doesn’t work
that way,” Brandt said. “The family is still the front line for providing
day-to-day care.”
In assisted living, patients or their families
may have to hire nursing assistants or companions to provide supplemental care,
since hands-on help is limited. In nursing homes, aides may visit less often,
since more hands-on help is available on-site.
Self-Referrals Are Allowed
Anyone can ask for a consultation with a hospice.
“We get many self-referrals, as well as referrals from family and friends,”
said Behrendt of Hospice of the Valley. Usually, a nurse will go out and do a
preliminary assessment to determine if a person would qualify for hospice
services.
To be admitted, two physicians — the patient’s
primary care physician and the hospice physician — need to certify that the
person’s life expectancy is six months or less, based on the anticipated
trajectory of the patient’s underlying illness. And recertification will be
required at regular intervals.
You Choose Your Physician
You have a right to keep your primary care
physician or you can choose to have a hospice physician be in charge of your
medical care.
At JourneyCare, the largest hospice in Illinois,
“we prefer that the patient keeps their primary care physician because that
physician knows them best,” said Dr. Mark Grzeskowiak, vice president of
medical services.
These arrangements require close
collaboration. For instance, if a nurse observes that a patient with heart
failure is experiencing increased shortness of breath, JourneyCare staff will
get in touch with that patient’s primary care physician. The physician is
responsible for altering the treatment plan; the hospice is responsible for
implementing that plan and giving clear instructions to the patient and family.
Concerns About Medications
“There’s a misconception that you’re going to
be medicated to a highly sedated state in hospice,” said Dr. Christopher Kerr,
chief executive officer and chief medical officer for Hospice
Buffalo Inc. in upstate New York. “The reality is our primary
goal is to increase quality wakefulness. Managing these medications is an art
and we’re good at it.”
Family caregivers are on the front line since
they’re responsible for administering pain medications such as morphine.
“Absolutely, there’s a great deal of fear and anxiety around all the issues
associated with giving medications,” said Cohn of Montgomery Hospice. “We try
to reassure caregivers that the doses we start with are very small and we’ll
see how the patient reacts and go slowly and deliberately from there.”
Because most hospice stays are short — the
median length is only 17 days — and because the diversion of painkillers from
people’s homes is a risk, doctors have begun writing prescriptions for a week
or two at a time, said Judi Lund Person, vice president of regulatory and
compliance for the National Hospice and Palliative Care Organization. If concerns
exist, hospices can have a lockbox for medications sent to the home.
Discharges Are Possible
Estimating when someone is going to die is an
art, not a science, and each year hundreds of thousands of hospice patients end
up living longer than doctors anticipated.
If physicians can document continued decline
in these patients — for instance, worsening pain or a noticeable advance in
their underlying illness — they might be able to recertify them for ongoing
hospice care. But if the patient is considered stable, they’ll be discharged,
various experts said.
In 2015, nearly 17 percent of hospice patients
were so-called live discharges, according to a report from the
Medicare Payment Advisory Commission. Two days before a discharge, hospices are
required to give the patient or family members a Notice of Medicare
Non-Coverage. Expedited appeals of
discharge decisions can be lodged with a Medicare
quality improvement organization.
There are no regulatory requirements governing
what hospices should do to facilitate live discharges. Some hospices will spend
weeks helping patients make arrangements to receive medications, medical
equipment and ongoing care from other sources. Others offer minimal help.
At The Very End
Almost 1 in 8 hospice patients don’t get
visits from professional staff during their last two days of life, according to
a study published in JAMA Internal Medicine last
year. And this can leave families without needed support.
Some hospices have responded by creating
programs specifically for people who have a very short time left to live.
“We’ve put together a special team for people who are expected to live 10 days
or less because that requires a different kind of management,” said Ann
Mitchell, chief executive officer of Montgomery Hospice. “Instead of a nurse
for every 15 patients, a nurse on this team will have five to six patients and
a social worker is available seven days a week.”
“One-third of our patients are here for less
than seven days and often we get them in a crisis,” said Kerr of Hospice
Buffalo. “We’ve had to repurpose our services to address the urgency and
complexity of these patients’ needs and that means we have to be ever more
present.” Across the board, Hospice Buffalo requires that patients be seen
within 24 hours of an expected death.
We’re eager to hear from readers about
questions you’d like answered, problems you’ve been having with your care and
advice you need in dealing with the health care system. Visit khn.org/columnists to
submit your requests or tips.
KHN’s coverage related to aging &
improving care of older adults is supported by The
John A. Hartford Foundation and coverage of end-of-life and
serious illness issues is supported by The Gordon and Betty Moore
Foundation.
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