the first National Hospital Discharge Survey, cancer
patients who were admitted to U.S. hospitals stayed
an average of 14. 8 days. By 2010, the final year of the
survey, hospital stays for cancer patients in the U.S.
lasted 6. 3 days on average.
Taking on tasks like caring for wounds, operating
specialized medical equipment like feeding tubes and
helping patients with large numbers of prescriptions,
including injections, is now the norm for caregivers,
says Susan Reinhard, senior vice president and director of the AARP Public Policy Institute and co-author
of Home Alone, a 2012 report on the complex tasks
that caregivers undertake. Caregiving for cancer
patients may be even more complex than for those
with other health conditions. Cancer Caregiving in
the U.S. reported that 72 percent of cancer caregivers
undertake medical/nursing tasks, compared to 56 percent of caregivers for patients with other conditions.
The report found that 43 percent of cancer caregivers
say they perform medical/nursing tasks and did not
receive any training.
Since 2014, 39 states have passed the Caregiver
Advise, Record and Enable (CARE) Act. This legislation, developed by AARP, requires hospitals to ask
patients if they’d like to have hospital staff include
the name of a caregiver in their records, notify that
person when the patient is going to be discharged
or moved, and provide training to the caregiver on
what to do to help the patient at home.
Even if they do receive instruction, caregivers
report that they don’t always remember the
details. “There’s a lot of information we’re giving
to patients and their families, but they are often so
overwhelmed and full of anxiety and uncertainty
and stress that it’s difficult to know whether or not
they are being adequately trained or prepared,” says
oncology nurse and researcher Michelle Mollica, a
program director at the National Cancer Institute
in Rockville, Maryland.
“It’s not fun being at the hospital,” recalls Renata
Louwers, whose first husband, Ahmad Khoshroo,
was diagnosed with early-stage bladder cancer at
age 69 in 2011 and with stage IV bladder cancer in
2013; he died in 2014. “You usually want to get out
of there as fast as possible … but we were sort of
scared to go home because we didn’t know what
Technical tasks are challenging, but so is decision
making, says Louwers, who lived in San Francisco
at the time. Her husband was prescribed opioids for
pain, but the medications that controlled his pain one
day were not always effective the next. Louwers
worked with his doctors to try different medica-
tions, readjust timing and dosage, and manage side
effects like constipation and grogginess. To keep track
of his ever-changing constellation of medications,
Louwers says, she wrote them down on a whiteboard.
“I felt like I was running a hospital.”
The Cost of Caregiving
Unpaid caregivers in the U.S. provided services
worth $470 billion in 2013, according to AARP.
But despite apparent savings for the health care
system, caregiving responsibilities can place considerable financial stress on families.
Around half of cancer caregivers have jobs while
caregiving, according to Cancer Caregiving in the
U.S. The Family and Medical Leave Act (FMLA)
requires that employers with 50 or more workers
allow caregivers to take off work for up to 12 weeks
annually without pay to care for a parent, spouse or
child. Four states—California, New Jersey, Rhode S T A T I