SUPPORTING FAMILY CAREGIVERS PROVIDING COMPLEX CARE

AARP PUBLIC POLICY INSTITUTE

December 2020

 

Theme

PHARMACY INNOVATIONS TO IMPROVE
PATIENT AND FAMILY ENGAGEMENT:

10 WAYS HOSPITALS HELP FAMILY CAREGIVERS PREPARE TO MANAGE MEDICATIONS

 

ABOUT THE SERIES
Supporting Family Caregivers Providing
Complex Care

The Caregiver Advise, Record, Enable (CARE) Act is now
law in more than 40 states and territories. Policy makers
recognize that family caregivers need support to perform
the medical/nursing tasks they face at home after a

family member or friend is discharged from the hospital.

The landmark 2012 AARP and United Hospital Fund
report Home Alone: Family Caregivers Providing Complex
Chronic Care, funded by The John A. Hartford Foundation,
drove rapid adoption of the CARE Act. The report also
inspired the creation of the Home Alone Alliance®", a
partnership of public, private, and nonprofit US
organizations coming together to change the way health
care organizations and professionals interact with
family caregivers.

Home Alone Alliance members are conducting a national
CARE Act implementation scan to identify promising
practices in hospitals and ways to overcome barriers.
Some practices involve applying proven strategies to
empower a new audience-family caregivers. Ten major
themes emerged and provide a glimpse into the value
and complexity of CARE Act implementation.

The Supporting Family Caregivers Providing Complex
Care series includes 10 papers that highlight these
themes. The series also features Promising Practice
papers that provide specifics on a single practice in
one health care system and Spotlight papers that
describe innovative state efforts to promote change or
a health care system that is implementing multiple
practices simultaneously. See www.aarp.org/
nolongeralone.

These early snapshots from the field share insights about
how hospitals are supporting family caregivers and open
a dialogue among leaders involved in enhancing health

care delivery. These early observations ultimately could

inform practice recommendations.

Overview

More than 26 million family caregivers in the United States
perform medical/nursing tasks for a family member or
friend-an increase of nearly 5 million from 2014 to 2019."?
Eighty-two percent of these family caregivers manage
medications.' These data do not include the unknowable but
enormous number of family caregivers managing short- and
long-term care needs related to COVID-19 (severe acute
respiratory syndrome coronavirus 2).

Managing medications is the task these family caregivers
perform most frequently.* They must understand, purchase,
organize, and administer prescription and over-the-counter
medications in forms such as pills, eye drops, suppositories,
patches, ointments, inhalers, and injections.

More than half of these family caregivers do not receive
instruction about the medications they are expected to
manage at home.° More and/or better instruction is the most
common response from family caregivers when asked what
would make it easier for them to manage medications.°

Hospitals increasingly innovate to provide such instruction to
support family caregivers and prevent complications that
result in the readmission of those receiving care.

Hospitals report making changes that include
the following:

e Providing patients with a supply of medication to
take home at discharge

e Scheduling hospital-based pharmacists to meet
with patients and family caregivers to reconcile
pre- and posthospitalization medications

e Establishing discharge suites where nurses review
medications and affordability with families

e Making follow-up calls to answer questions and
resolve issues

This paper shares promising pharmacy innovations that help
family caregivers and those receiving care with the complex
and stressful details of managing medications.

 
Pharmacy Innovations to Improve Patient and Family Engagement

 

Identifying Themes from
Hospital Visits

To learn how hospitals are supporting family caregivers
after CARE Act implementation, we assembled a research
team of Home Alone Alliance and AARP Public Policy
Institute leaders, nurse researchers, and policy experts to
design and conduct site visits to hospitals across the
country. This work was funded in part by The John A.
Hartford Foundation, the Ralph C. Wilson, Jr. Foundation,
and AARP.

The research team has visited dozens of health systems
and hospitals in Arkansas, California, Colorado, Illinois,
Michigan, Nebraska, Nevada, New Jersey, New York,
Virginia, and West Virginia. We typically meet with leaders
and staff from at least two health systems per state and
two to three hospitals per system. The team visits a variety
of types of hospitals: nonprofit, for-profit, and government
hospitals; academic health centers; midsize suburban
systems; critical access hospitals in rural communities;
and level | through V trauma centers.

Participant informants include chief nursing officers, chief
technology officers, service and unit managers, patient
experience leaders, quality champions, administrators,
educators, front-line nurses, physicians, electronic health
record (EHR) leaders, and staff from areas such as clinical
and social services, accountable care organizations (ACOs),
pharmacy, registration, and admissions. We consult
individuals from family advisory councils, community-
based organizations, AARP state offices, consumer
advocacy organizations, professional groups, and state
hospital associations. We conduct focus groups with
family caregivers who have had a recent experience with
a particular hospital or system. Interviews are recorded
and then analyzed, identifying common themes and

novel approaches.

The intention of the Supporting Family Caregivers Providing
Complex Care series is to describe the experiences of

those making changes that align with the CARE Act. These
early snapshots from the field describe the highlights of
supports in place for family caregivers who provide
complex care at home to a family member or friend after
discharge from the hospital. The series opens a dialogue
among health care leaders with a wide variety of
perspectives. The papers share insights and could form
the basis for future recommendations about supporting
family caregivers.

Emerging Themes of the Supporting Family
Caregivers Providing Complex Care
Publication Series

= Pharmacy innovations

e Learning resources for family caregivers
e Staff training

¢ Communication practices

e EHR supports to identify and include family
caregivers

e Transition in care programs and postdischarge
support

e Approaches to making practice and system
changes

¢ Screening practices
e Addressing needs of specific populations
¢ Benefits of the CARE Act

a
The Need

More than Half of Family Caregivers Do
Not Receive Instruction in the Hospital

Medications are a significant element of any hospital
discharge plan, and family caregivers need specific
guidance on how to manage them. Good medication
management at home can be the most critical aspect of
recovery for the person receiving care. If not monitored
appropriately and administered correctly, some
medications can cause devastating complications that can
adversely affect the care recipient's quality of life for an
extended time or through the end of life.

Lack of family caregiver preparation can lead to
complications that bring decline and intense pain for the
person receiving care. It can also generate family stress
and upheaval when a complication triggers an emergency
department visit, readmission, cascade to dependency,
financial devastation, nursing home placement, or death.

Yet more than half of family caregivers report that they
do not receive instruction in the hospital about the
medications they are expected to manage at home; they
learn on their own.'

 
Pharmacy Innovations to Improve Patient and Family Engagement

 

Medication management is often complex and
time consuming.

e Family caregivers must administer the right medication
in the right dose at the right time. With many medication
regimens, family caregivers give medications every day
of the week, up to six times a day, and sometimes during
the night, for years.

e Nurses who are also family caregivers report that even
with their clinical knowledge and experience, they
can find it challenging to manage a family member's
medications at home.

e Nearly half of adults between the ages of 70 and 79 take
5 or more prescription medications; an additional 10 to
20 percent take 10 or more.®

e Those who take many medications-especially older
adults and those without a good understanding of why
they are taking each medication-may fare better by
reducing the number of medications they take.

m People can become overmedicated when they see
multiple health care providers and/or use multiple
pharmacies and can inadvertently end up taking
medications with different names but the same active
ingredients.

m An individual can end up taking a new medication to
address what is actually a side effect of another
medication-but is mistaken for a symptom of a new
or existing condition.

m Issues with an ongoing medication regimen can arise
as adults grow older. Toxicity due to metabolizing
medications differently can occur. Sometimes
stopping a medication is needed because the risks
begin to outweigh the benefits.

The Instruction Family Caregivers Need Is
Not Available Outside the Hospital

Managing medications today requires skills previously held
by health care professionals, including an understanding
of the purpose of the medication, the proper procedures in
administering the medication, indications of complications
or adverse side effects, and when and who to call for

help. Some of the medications require special supplies or
equipment, and all require focused attention.

Family caregivers need instruction from professionals
during the hospital stay because there is no other way for

them to get detailed, nuanced information tailored to the
specific situation of the care recipient.

The top two medication issues that family caregivers
report are fear of making a mistake and the constant need
to focus their attention on managing and administering
medications.' Fear of making a mistake comes in part
from lack of understanding of the medication regimen.
To ensure understanding, family caregivers need multiple
learning opportunities throughout the hospital stay to
hear instructions, repeat back what they've learned, and
receive feedback (the teach-back instructional method).
The more numerous and complex the medications, the
greater the need.

Diverse Family Caregivers Face Varying
Challenges

Family caregivers are culturally diverse, multigenerational,
and gender inclusive. Accordingly, interventions to meet
family caregiver needs for support and guidance must be
diverse and flexible.

e@ When a family member is hospitalized, men are less
likely than women to receive instruction on how to
perform complex tasks such as medication management
after discharge. Men report that they struggle more with
certain tasks, such as managing pain.'°

e Multicultural family caregivers are more likely to
experience strain and worry about making a mistake,
regardless of income."

e Caregivers with incomes below $25,000 report greater
difficulty managing medications and other medical/
nursing tasks than those with higher incomes."

e Different age cohorts face distinct challenges for their
life stage.

m Twenty-five percent of caregivers are millennials, and
40 percent of millennials and younger caregivers are
supporting someone with a behavioral health
condition. These younger generations of family
caregivers experience almost twice as much difficulty
managing medications as older generations.'*

m= More older family caregivers indicate they have no
choice in taking on medical/nursing tasks like
managing medications compared with younger
generations of family caregivers."

 
Pharmacy Innovations to Improve Patient and Family Engagement

 

Pain Medications Can Be Hard to Obtain
and Require Constant Monitoring

Seventy percent of family caregivers face the practical and
emotional strain of managing pain."®

Pain medications are especially challenging for family
caregivers to manage. Family caregivers typically are not
aware they can request a pain management or palliative
care consult. They do not know the questions to ask or
strategies for getting and using effective pain medications.
Health care and social service professionals often do not
address pain management in detail or elicit and respond to
the worries of family caregivers.

Concerns about the overprescribing of opioids have led to
difficulties in obtaining adequate pain relief, particularly
for people whose chronic pain is managed with high levels
of opioids. Twenty-one percent of men and 14 percent

of women experience difficulty getting prescriptions for
pain medications. About 2 in 10 generation X, millennial,
and younger adult caregivers experience difficulty getting
prescriptions for pain medications, compared with fewer
than 1 in 10 of the silent generation."

Pain medication requires constant monitoring and frequent
adjustments, making pain an ongoing unpleasant focus
and adding to the stressful feeling of the loss of control for
both the person receiving care and the family caregiver.
More men than women report difficulties and worry
relative to pain medications. Twenty-two percent of men
and 16 percent of women worry about giving a family
member too little medication. Thirty-one percent of men
and 25 percent of women worry about giving too much
medication."

Additional Challenges Impede Successful
Medication Management at Home

Multidimensional challenges to medication management
include the following:

e When family caregivers do not understand the need for a
medication, they may be less likely to ensure adherence
to it; they should be made aware of what may happen if
a medication is not given.

e@ When the people receiving care are unable to manage
their own medications because of illness, injury,
dementia, depression, or a cognitive impairment, it is
especially important for family caregivers to understand
the medication regimen.

e Affordability and transportation to a retail pharmacy
or the home of the person receiving care are common
barriers for family caregivers.

e Family caregivers need help understanding myriad
details that can affect health outcomes:

m= What time they should administer once-a-day
medications. For example, family caregivers need to
be aware that medications that may interfere with
sleep should be taken during the day while those that
cause drowsiness should be taken in the evening.
Some medications should be taken with meals.

m How to administer medications with conflicting
instructions. An example is two medications that
need to be taken at the same time of day, but one
requires an empty stomach and one must be taken
with food.

= How to minimize medication side effects. For example,
a medication that can cause lightheadedness,
weakness, or insomnia increases the risk of a fall.

m When they can and cannot split pills to save on
medication costs. Some pills do not work the same
way if they are split.

m The effects of over-the-counter medications and
supplements. Some may affect how certain
prescription medications work.

 
Pharmacy Innovations to Improve Patient and Family Engagement

 

 

Practical Obstacles: A Vignette

The following example illustrates some of the issues family caregivers face when managing medications at home
after discharge. The promising practices shared in this paper can help address those issues.

Example: Isaac picks up his sister, Jasmine,

at the hospital. Jasmine fell recently and

injured her shoulder. She has dementia and
often experiences additional confusion toward the end
of the day. The discharge process is slow, and Isaac
worries that Jasmine's dinnertime will be delayed. When
her routine is interrupted, she sometimes will not eat,
which triggers anxiety, diabetes-related issues, and
medication refusal. In a hurry to get Jasmine home in
time for her 6:00 p.m. dinner hour, Isaac is distracted
about getting out of the hospital and rushes the nurse's
explanation of Jasmine's new medications.

At home, Jasmine will not eat dinner, so Isaac does not
give her a medication that must be taken with food.
Jasmine agrees to take only two of her four other
previously prescribed routine medications. Isaac leaves
Jasmine home alone while he takes a bus to two
pharmacies because the first pharmacy does not have
the new pain medication in the strength and form
prescribed by the doctor at the hospital. Neither Isaac
nor Jasmine can afford the price of the medication.
Isaac calls their brother, who reluctantly pays the
pharmacy over the phone.

When lsaac gets home, Jasmine is in excruciating pain
from a fall in the bathroom. He gets her to bed and
gives her the pain medication as he tries to calm her
down. Jasmine is in pain throughout the night. Isaac is
not sure if it is because Jasmine's pain medication is
not working, she was injured when she fell, her
medication regimen has been interrupted, or she has
not eaten enough. Isaac looks at the discharge
instructions, but they are long and hard to understand.

Isaac is so desperate to help Jasmine that during the
night he gives her more than the prescribed dose of

pain medication, fervently hoping nothing bad will
happen as a result. He does not know who to call for
help but decides to call her primary care doctor. It is a
Saturday, so the office is not open; he is told to take
Jasmine to the emergency department at the hospital
for an evaluation. It takes Isaac an hour to coax tired

Jasmine out into the rain to get the bus.
Repercussions: Jasmine was readmitted to
the hospital with increased confusion and pain
and a dangerous blood sugar level. Isaac felt

inadequate and resentful because he missed an additional

day of work.

supply of medication at discharge so Isaac
= would not need to leave Jasmine alone to go
to the pharmacy, and Jasmine's pain would not spike,
rendering it harder to control. The hospital could
provide instruction throughout the hospital stay to
prepare Isaac to handle common scenarios that could
result from Jasmine's specific circumstances. A hospital
pharmacist could counsel Isaac on the nuances and
dangers of obtaining and administering opiate pain
medications. A prescriber could ensure a home
evaluation by writing an order in the hospital for home
health support and a visiting nurse referral.

Opportunity: The hospital could provide a

Isaac would be prepared to understand whether the
pain medication was working and would have a phone
number to call with questions, even in the middle of
the night. He would feel empowered to take action
and respond appropriately before Jasmine develops

a problem that results in readmission. Isaac and
Jasmine would have a better experience and less
disruption of their lives.

 
Pharmacy Innovations to Improve Patient and Family Engagement

 

10 Highlighted Practices

Ways Hospitals Equip Family Caregivers to Manage Medications

Hospitals provide individual guidance in varying ways to
ensure family caregivers can understand, afford, reconcile,
organize, and administer medications in forms such as
pills, eye drops, suppositories, patches, ointments, inhalers,
and injections.

Staff pharmacists, pharmacy technicians, and nurses
educate family caregivers about medication management,
how to know if a medication is working as expected, adverse
drug events and interactions, how to mitigate side effects
(including those that can mimic symptoms of a condition),
what to look for, what to call about, and who to call. They
probe for vital information to make the medication
reconciliation process as accurate and complete as possible.
They address barriers related to adherence and
transportation to purchase medications. They also offer
opportunities to ask questions about insurance and less
expensive alternatives, dosing, directions, dietary
restrictions, and alcohol use. Often they can coordinate with
the family caregiver's local retail pharmacist or mail-order
pharmacy to ensure availability, affordability, and delivery.

Highlighted strategies to provide this information, gathered
during our ongoing national CARE Act implementation
scan, appear below. Hospital leaders use one or a
combination of these strategies, some of which are a
direct result of the CARE Act. Some supports were already
in place and many are enhanced to achieve consistency
across an organization.

 

@ Providing medications in the hospital or
prescriptions before discharge

Health care leaders recognize the value of having
medications on hand when patients arrive at home.
This prevents leaving the person receiving care at
home alone while the family caregiver goes to a
pharmacy to fill prescriptions.

Some health care systems have "meds to beds"
programs. Some hospitals focus on high-risk patients
at the start of the program.

e Several health care systems have programs that
deliver medications from an internal or retail
pharmacy to the bedside or home before the day
of discharge and provide access to a pharmacist

for questions. They provide a few days' supply to a
full 30-day supply. Some hospital pharmacies are
open 24/7.

e Some hospitals provide prescriptions before
discharge so family caregivers can pick up
medications at a retail pharmacy. At some
hospitals, pharmacists coordinate directly with the
family caregiver's local retail pharmacist.

e Atone hospital, the family caregiver picks up
medications from the hospital pharmacy as part of
the discharge process. Intravenous medications
are delivered either to the patient room or home,
depending on the equipment required to
administer them.

 

(2) Conducting medication reconciliations
during multiple transitions

Hospitals have historically conducted medication
reconciliation at discharge. The process entails
comparing medications taken before the hospital stay
with those to be taken at home after discharge-to
account for differences, duplications, and gaps. Many
hospitals now conduct the medication reconciliation
process at one or more additional junctures, such as
before, during, or shorily after admission and within
days of discharge by phone.

Many hospitals conduct a medication reconciliation
upon admission. This helps clinicians determine the
effectiveness and safety of the home medication
regimen and address during the hospital stay any
omissions or lack of adherence.

In the emergency department of one hospital,
pharmacy technicians ask patients, "Who fills the
medicine box at home?" That helps the techs identify
and educate family caregivers. They check the
accuracy of the medication box and call the patient's
retail pharmacy to confirm the medications the
patient has been taking.

 

(3) Dedicating pharmacists to meet with
patients and family caregivers

Some hospitals hire staff pharmacists specifically to
conduct admission and discharge medication

 
Pharmacy Innovations to Improve Patient and Family Engagement

 

reconciliations and encourage family caregivers to
participate in the discussion in the hospital room. In
some pharmacy programs, this practice is part of
residency training.

In a hospital where admissions come primarily from
the emergency department, pharmacy technicians
conduct the medication reconciliation process while
individuals and family caregivers wait to be seen in
the emergency department. Pharmacists consult with
high-risk individuals. There are three significant
benefits of this timing:

1. A family caregiver is typically present in the
emergency department, so the timing takes
advantage of that person's presence and insights.

2. Clinicians get an accurate medication list that
informs the medical history and physical
examination they will conduct-which is especially
helpful during clinical evaluations of high-risk or frail
older adults and those taking multiple medications.

3. Having this up-to-date information in the patient
record speeds the discharge process.

 

(5) Ensuring family caregiver understanding

by using the teach-back method-
throughout the hospital stay

Health care systems recognize the effectiveness of
the teach-back method of instruction to ensure those
receiving care and family caregivers understand
discharge instructions and the care plan they will
implement at home.

Hospital staff use this instructional method to allow
family caregivers to hear instructions, repeat back in
their own words what they've learned, see
demonstrations of administering injectable and other
medications, practice caregiving tasks with
supervision, receive feedback, and ask questions.

Staff use teach-back during multiple learning
opportunities throughout the hospital stay to
reinforce the enormous amount of information family
caregivers must digest and master.

 

 

(4) Establishing a robust discharge suite

staffed by nurses

At some health care systems, medication
management support is part of a systemwide
transitions of care program that includes separate
transition suites. These discharge suites include
dedicated nurses who give family caregivers the
unhurried focused attention they need to fully
understand and prepare for their postdischarge
responsibilities. These suites are an improvement to
the ineffective discharge lounges of the past that
functioned largely as patient waiting areas.

Transition suites provide a safe place for patients and
family caregivers-especially those dealing with a
high-risk situation-to learn about the medications
they will be managing, get help finding them at
affordable prices, and practice with supervision the
medical/nursing tasks they will perform at home.

For additional details about supporting family
caregivers during care transitions, see Jransitions in

Care and Postdischarge Support Practices to Improve
Patient and Family Engagement: 16 Ways to Prepare

Family Caregivers for Their Postdischarge
Responsibilities in this publication series.

(6) Making postdischarge follow-up phone

calls to the home

Staff pharmacists or nurses at many hospitals make
one or more follow-up calls to the home, 1 to 3 days
after discharge. One hospital also makes 90-day
follow-up calls. Some health care systems provide a
nurse hotline staffed through a dedicated call center;
in other systems, specially trained unit nurses make
calls. One health care system organizes its calls
through a centralized case management structure.

One hospital calls every patient's home after
discharge and tracks issues as part of its CARE

Act implementation. The staff note anecdotally that
the most common issues relate to medications and
arranging support services at home and that family
caregivers seem more comfortable asking questions by
phone after discharge than in person in the hospital.

 

(7) Setting up focused follow-up

appointments with primary care providers

One health care system developed an internal
partnership between research and operations to
arrange a patient visit with the primary care provider
within a week of discharge. The goal of the
appointment is to follow up on details of the hospital
stay rather than on routine care. The program began
in a cardiac unit because of postdischarge issues with

 
Pharmacy Innovations to Improve Patient and Family Engagement

 

medication management and now also supports other
patients at high risk.

Another system has an ACO clinical laboratory that
develops strategies for scaling successful pilot programs
for ACO patients. In one approach, the hospital-based
care team participates in follow-up care. Patients
receive a phone number for the nurse coordinator, a
follow-up appointment with a primary care physician,
and 30 days of medication. The goal is to subsequently
roll out successful ACO programs to all patients.

 

(8) Adding to the EHR a list of medications

older adults should potentially avoid

Some health care systems build a tool into the EHR to
provide decision support and alerts that help
prescribers avoid potentially inappropriate
medications for older adults. They include sample
language in the EHR to help prescribers use
consistent language to facilitate understanding when
talking with care recipients and family caregivers.

For additional details about EHR enhancements that
support family caregivers, see_E/ectronic Health
Record (EHR) Practices to Improve Patient and Family
Engagement: 9 Ways to Help Staff Access Data on
Family Caregiver Discharge Preparation in this

publication series.

 

9) Sharing educational materials about

frequently used medications

At one hospital, a surgery unit distributes a booklet
staff developed on frequently used postoperative
medications.

For additional details about educational materials for
family caregivers, see Learning Resources and
Practices to Improve Patient and Family Engagement:

12 Ways to Facilitate Family Caregiver Education in
Hospitals in this publication series.

 

(40) Assisting with affordability

With the goal of ensuring that all who leave the
hospital with prescriptions are able to fill them,
nurses at one health care system call prescribers to
arrange for a less costly substitute, or they obtain
coupons for family caregivers to use at a retail
pharmacy. At some hospitals, social workers

collaborate with family caregivers to ensure
medications are affordable. At hospitals with
transition suites, discharge nurses work with family
caregivers to find low-cost medications.

Quantifying the Benefits

Benefits of Integrating Family
Caregiver Support

For Organizations and Staff

¢ Preventing discharge delays-Instructing family
caregivers helps hospital staff avoid discharge delays.
Staff can provide and reinforce information gradually
throughout the hospital stay rather than deliver large
quantities of information to distracted family caregivers
during the flurry of discharge activity. Staff can also
better coordinate discharge scheduling when family
caregivers understand the process and are prepared to
arrive at the hospital at the time of discharge.

Streamlining staff communication with family
members-Family caregivers can relay information to
other family members and friends, saving hospital staff
the time and energy spent repeating the same information
to multiple individuals. When families are uncertain
about who is the most suitable person to serve as the
primary family caregiver, offering time for families to
come to consensus is helpful. Allowing extra time also
helps when large families want to divide caregiving tasks
among multiple individuals.

Improving quality by taking advantage of the
knowledge family caregivers have about the person
receiving care-During live learning opportunities,
family caregivers can share relevant details about the
hospitalized person's goals, values, fears, preferences,
and responses to treatment. That information helps
inform care plans and improve the quality and safety

of care. Family caregivers can also bring to the staff's
attention subtle changes in the patient that signal a
need for intervention and provide additional context
that can affect decisions about care. Having information
about unique circumstances such as social determinants
of health, known medication side effects, delirium,
dementia, and substance use can be vital in developing
a successful care plan.

 
Pharmacy Innovations to Improve Patient and Family Engagement

 

* Instructing the right person in postdischarge care-
By correctly identifying the person or people who will be
helping at home, hospital staff can focus their efforts
appropriately. It is vital to ask who will serve as the
primary family caregiver because staff may not ever
encounter that individual in the hospital room. It is also
important to let families know they should inform the
hospital staff if someone else becomes the primary
family caregiver.

For Families

e Detecting complications early to prevent problems
that can lead to readmissions-Qualitative data indicate
that discharged patients may be less likely to have a
complication at home that interferes with their recovery
or requires an emergency department visit or hospital
readmission when staff across roles and shifts assess
family caregivers and fully prepare them for the care
they will be providing. When family caregivers understand
how to identify a potential complication early, they can
seek help before the problem requires treatment in the
hospital setting.

e Decreasing family caregiver emotional, practical, and
financial strain-Family caregivers who are adequately
prepared to provide care at home can experience reduced
strain and disruption of daily life during and after a family
member's hospital stay. They are better equipped to
manage complex medical/nursing tasks and pain, which
is a major issue that carries an emotional as well as
practical and sometimes financial strain."®

When family caregivers understand what to do and
expect and how to look for potential complications, they
have increased confidence and attentiveness. Good
preparation allows them to focus at home on providing
emotional support to the care recipient and to address
the impact of caregiving on their own health and well-
being. Good preparation also gives care recipients
confidence in the family caregivers.

e Facilitating continuity of care-A designated primary
family caregiver with a good understanding of the care
he or she will be providing at home can serve as the main
point of contact to ensure continuity of care before, during,
and after a hospital stay. The hospitalized individual may
move to a skilled nursing or assisted-living facility or-
more commonly-back home or to a family member's
home. Continuity of care during all transitions within and

outside the hospital helps ensure medication
reconciliation and accurate and complete
communication of patient-specific details, including
values and preferences, and prevents care and
communication gaps, errors, and omissions.

e Arranging appropriate support at home to foster a
successful recovery-By having early and ongoing
conversations about care for the patient after discharge,
staff and family caregivers can collaborate to determine
what will be needed and arrange for adequate instructions,
supplies, and equipment necessary to manage medical/
nursing tasks at home and any further help that may be
required. Staff can provide referrals to community
resources that support the plan for postdischarge care.

e Supporting independent living-Because a person's
ability to continue living independently can depend on
the care he or she receives following hospital discharge,
it is particularly important for staff to collaborate with
family caregivers who will help people with special
needs or older adults at home. It is also helpful for
hospital staff to know if the person receiving care will
have a temporary stay at another facility, such as a
rehabilitation center, so they can provide information
that will facilitate transitions to and from that setting.

What Does Success Look Like?

During site visits with health care organizations that are
implementing changes to include family caregivers in the
care process, we examined the impact of the
enhancements. Although hospitals use scorecards and
track many metrics, there wasn't universal identification of
the direct link of family caregiver engagement with
improvements in complication rates, emergency
department visits, readmissions, follow-up inbound and
outbound phone calls, and patient satisfaction.

An opportunity exists to set up a scorecard that monitors
key metrics over time with a special emphasis on linking
family caregiver interventions to specific outcomes. Health
systems can consider tracking and trending data by unit
and department to measure the impact of including family
caregivers throughout the hospital stay.

Ultimately, the best measure of success is the
experience of the family caregivers and whether they
feel included, heard, confident, and prepared to go
home for the next phase of care.

 
Pharmacy Innovations to Improve Patient and Family Engagement

 

 

Overcoming Perceived Barriers

Resolving Challenges of Preparing Family Caregivers to Manage Medications

Hospital leaders identify obstacles to preparing family
caregivers to understand, manage, and administer
medications and develop ways to overcome those
barriers. Initial reactions to the provisions of the CARE
Act by hospital leaders and staff during site interviews
include concerns that ultimately diminish.
ee ky
Ti provide the ideal level of support to every
family caregiver.
e Resolutions: Hospitals scale approaches over
i time. Some hospitals tie interventions to a
specific need. An example is prioritizing
postdischarge calls to those with high-risk conditions
who are identified as having low medication adherence

and literacy. Other follow-up call strategies appear
earlier in this paper.

Challenge: There are not enough resources to

ee Challenge: Family caregivers in the hospital
ql | often cannot process information about
medication regimes because they are caught

off guard about the level of responsibility they face or
are too anxious to digest information.

e Resolution: Physicians prescribe home health
support so patients and family caregivers get

skilled nursing instruction at home shortly
after discharge. This path is particularly helpful for
patients with Medicare, who will likely receive the
skilled nursing support at home at no charge. A home
health professional can also help family caregivers
create a medication management system that works for
them and helps ensure adherence.

ee % Challenge: Discharge delays occur when
Ti family caregivers aren't available for
medication reconciliation and instruction.

e Resolution: Hospitals provide instruction
throughout the hospital stay at times
convenient for staff and family caregivers.

Hospital staff anecdotally report significant decreases in
medication discrepancies by having a standard process.

 

Additional Information
Implications of COVID-19

The COVID-19 pandemic has intensified the importance of
identifying and engaging family caregivers. Strict visitor
policies have hampered the ability of family caregivers to
be part of the hospital experience and be available to
support their family member and participate in care.
Limited face-to-face interaction between hospital staff and
family caregivers hinders communication about contextual
details and decision support-creating challenges for staff
members to maintain care quality and for family caregivers
to obtain guidance and instruction on postdischarge care.

Innovations are emerging to foster communication and
support caregivers in new ways through technology.
The timely launch of the Supporting Family Caregivers
Providing Complex Care publication series highlights a
wide variety of promising practices in family caregiver
support just when they are most urgently needed.

Helpful Resources

Medication Management Form for Individuals

AARP provides a template called My Personal Medication
Form in English and Spanish. It is available at https://
www.aarp.org /health/drugs-supplements/info-2007/

my_personal_ medication record.html.

The CARE Act

The name of the law and its specific provisions vary by
state, but CARE Act legislation generally requires that
hospitals do the following to support family caregivers:

e Advise individuals in the hospital of their opportunity to
identify a family caregiver.

e Record the caregiver's name and contact information in
the health record (with the patient's permission).

e Enable family caregivers by providing as much notice as
possible about discharge timing, consulting with them
about the discharge plan, discussing their role in

 

10
Pharmacy Innovations to Improve Patient and Family Engagement

 

carrying out that plan, and instructing them on the
medical/nursing tasks they will handle at home.

See the CARE Act map, which shows more than 40 states
that have passed the legislation.

Researcher Contact Information for Health
System Leaders

The Home Alone Alliance and AARP Public Policy Institute
leaders, nurse researchers, and policy experts continue to
conduct the national scan of hospitals that have implemented
the CARE Act and will share further results of that work. We
welcome the opportunity to discuss findings with health
system leaders to facilitate the culture change involved in
fundamentally integrating family caregivers into existing
hospital practices. To contact us, please email

homealonealliance@aarp.org.

Free Video Demonstrations of Medical/Nursing
Tasks for Family Caregivers

How-to videos and printable resource guides created
specifically for family caregivers show how to manage
specific tasks related to wound care, mobility, managing
medications, preparing special diets, and handling
incontinence. These resources, many of which are
available in both English and Spanish, are free of charge

to all. Visit aarp.org/nolongeralone.

Related Publications for Professionals, Clinicians, and
Policy Makers

To see details and data about the 20 million family caregivers
in the United States who perform medical/nursing tasks and
worry about making a mistake, see Home Alone Revisited:

Family Caregivers Providing Complex Care, a 2019 special
research report by the founding partners of the Home

Alone Alliance™, a collaborative of AARP, and funded by
The John A. Hartford Foundation."

The Supporting Family Caregivers Providing Complex Care
series of publications is based in part on insights in

Home Alone Revisited and The Care Act Implementation:
Progress and Promise, a 2019 AARP Public Policy Institute
Spotlight report.2° 2!

The American Journal of Nursing (A/N) publishes award-

winning evidence-based, peer-reviewed articles and
videos that teach clinicians how to best support family
caregivers. A/N also disseminates the work of the Home
Alone Alliance to nurses through editorials, podcasts,

and social media content. Home Alone Alliance articles
approved for continuing education credit are funded by
AARP, The John A. Hartford Foundation, the Retirement
Research Foundation on Aging, and the Ralph C. Wilson, Jr.
Foundation.

The National League for Nursing (NLN) offers simulation
modules nurse educators can use at no cost to teach
students about the individualized needs of family
caregivers. The Advancing Care Excellence for Caregivers
(ACE.C) program was developed with generous funding
from The John A. Hartford Foundation and the AARP
Foundation,

Additional Theme Papers in This Series

e Learning Resources and Practices to Improve Patient
and Family Engagement: 12 Ways to Facilitate Family
Caregiver Education in Hospitals (PDF)

e Staff Training Practices to Improve Patient and Famil
Engagement: 16 Ways to Include Family Caregivers and
Prevent Discharge Delays (PDF)

® Communication Practices to Improve Patient and Family
Engagement: 10 Ways to Identify and Engage Family
Caregivers in Hospitals (PDF)

e Electronic Health Record (EHR) Practices to Improve
Patient and Family Engagement: 9 Ways to Help Staff
Access Data on Family Caregiver Discharge
Preparation (PDF)

Publications in the Supporting Family Caregivers Providing
Complex Care series are available at www.aarp.org/
nolongeralone. For more information about the CARE Act,
visit the AARP Public Policy Institute website or htips://
states.aarp.org/tag/the-care-act. To learn more about the

Home Alone Alliance, visit www. nolongeralone.

 

11
Pharmacy Innovations to Improve Patient and Family Engagement

 

Series Authors

Authors of the Supporting Family Caregivers Providing
Complex Care series of publications:

e Susan C. Reinhard, RN, PhD, FAAN, Senior Vice
President and Chief Strategist, Nursing Workforce
and Family Caregiving Initiatives, AARP Public Policy
Institute. @susanpolicy

e Heather M. Young, RN, PhD, FAAN, Senior Fellow, AARP
Public Policy Institute; Professor, Betty Irene Moore
School of Nursing, University of California, Davis.
@YoungHeatherM

e Rita B. Choula, MA, Director, Caregiving, AARP Public
Policy Institute. @rchoula

e Karen Drenkard, RN, PhD, FAAN, NEA-BC, Associate
Dean, Clinical Practice and Community Engagement,
The George Washington University School of Nursing.
@DrDrenk

e Beth R. Suereth, Founder and Chief Executive Officer,
Caregiving Pathways. @BethSuereth

 

' Susan C. Reinhard et al., Home Alone Revisited: Family Caregivers
Providing Complex Care (Washington, DC: Home Alone Alliance, 2019),

 

providing- complex-chronic- care.html.

2 AARP and National Alliance for Caregiving, Caregiving in the U.S.
2020 (Washington, DC: AARP, 2020), https://www.aarp.org/ppi/
info-2020/caregiving-in-the-united-states.html.

37 Reinhard et al., Home Alone Revisited.

8 Rachel Nania, Taking Multiple Medications Can Lead to Unsafe
Interactions and Side Effects (Washington, DC: AARP, January. 14, 2020),
https://www.aarp.org/health lements/info-202
staying-safe-on-multiple-prescriptions.html.

9-20 Reinhard et al., Home Alone Revisited.

21 Susan C. Reinhard et al., The CARE Act Implementation: Progress and
Promise (Washington, DC: AARP Public Policy Institute, 2019), aarp.

org /ppi/info-2017/from-home-alone-io-the-care-act.html.

Supporting Family Caregivers Providing Complex Care
Theme Paper #1007, December 2020
© AARP PUBLIC POLICY INSTITUTE
601 E Street, NW
Washington, DC 20049

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For more reports from the Public Policy Institute, visit the Public Policy Institute website.

Home Alone Alliance

a collaborative from AARP

 

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