SUPPORTING FAMILY CAREGIVERS PROVIDING COMPLEX CARE

AARP PUBLIC POLICY INSTITUTE

November 2021

 

Theme

BENEFITS OF THE CAREGIVER ADVISE,
RECORD, ENABLE (CARE) ACT:

4 PERSPECTIVES ON ENHANCING PATIENT AND FAMILY ENGAGEMENT IN HOSPITALS

 

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

People are discharged from the hospital earlier in the
recovery process than ever, leaving them in need of
additional complex care at home. Family members and
friends learn on their own how to deliver this care and
perform the medical/nursing tasks previously provided by
trained professionals.' When those family caregivers are
not prepared, care recipients often experience pain and
complications that lead to avoidable readmissions. Their
family caregivers endure stress, guilt, and upheaval.

The commonsense CARE Act was designed to ensure
family caregivers receive the guidance, instruction, and
support they need to manage the postdischarge
responsibilities they face at home.

Hospitals leaders implementing the CARE Act report
that engaging and educating family caregivers provides
significant value for patients, families, clinicians, and
health care systems.

Hospitals consistently recognize that supporting family
caregivers as outlined in the tenets of the legislation
accomplishes the following:

e Aligns with person- and family-centered care goals;

e Leads hospitals to establish foundational processes that
standardize family caregiver identification and support
and give family caregivers the tools they need to be
successful at home;

e Enables staff to learn about care recipient goals, values,
fears, preferences, and responses to treatment and to
manage family caregiver expectations about the
difficulties of providing care at home;

e Reduces emergency department visits, readmissions,
and the length of hospital stays;

e Ensures smoother and easier transitions between care
settings by averting care gaps and omissions; and

 
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

e Decreases anxiety for people receiving care and their
family caregivers by equipping and empowering them;

Some hospital supports and processes are new
innovations. Others have become formalized or
standardized as a result of the CARE Act.

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,
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 to
identify 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

Emerging Themes of the Supporting

Family Caregivers Providing Complex

Care Publication Series

™ Benefits of the CARE Act

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

e Pharmacy innovations
e Screening practices
e Addressing needs of specific populations

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.

Hospital Leader and Front-Line
Staff Reactions to the CARE Act

Throughout our ongoing national CARE Act implementation
scan, we consistently see three primary reactions from
hospital leaders and staff after integrating family

caregiver support:

1. Health system leaders have long wanted to more
actively support family caregivers, but they were not
able to make that objective a priority until passage of
the CARE Act.

2. Hospitals acknowledge that preparation for postdischarge
care must take place throughout the hospital stay through
formalized processes.

3. Nursing staff express that although initially they felt
they already performed the work described in the CARE
Act, they are surprised at how helpful it is to have a
framework to enable consistency in family caregiver
preparation-especially for people caring for older adults.

 
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

4 Stakeholder Perspectives:
Highlights of CARE Act Benefits

Passage and implementation of the CARE Act continue to
spark widespread culture change throughout US health
care systems. During our ongoing national implementation

be a melalui i's

ae he

For Care

[=o Recipients

scan, hospital leaders and front-line staff report a
multitude of benefits of the CARE Act. Preparing family
caregivers to provide safe and effective postdischarge
care offers significant value to family caregivers, care
recipients, clinicians, and health care organizations.

pA ee lel ts For Health Care
al ol e=e-Tal rete) aby

 

1. Improved communication
with clinicians

6. Increased ability to live
independently

11. Increased comfort asking
for family caregiver
information

16.A person- and family-
centered focus

 

2.Increased flexibility in
their role

7. Smoother transitions from
hospital to home or a
long-term care setting

12.Streamlined staff
communication with
family members-focusing
communication

17. Reduction in discharge
delays

 

3. Decreased family caregiver
emotional, practical, and
financial strain

8. Deeper support when
going home on hospice

13. Instructing the right person
in postdischarge care

18.Improved quantitative
success metrics

 

4.Enhanced continuity of
care

9. Improved patient
satisfaction

14. Improving quality by
taking advantage of the

19. Improved qualitative
successes

knowledge family
caregivers have about the
person receiving care

 

10.Pharmacist support in the
hospital, reconciling
medication lists, and
enhancing understanding
of medications and how
to manage them

5. Appropriate support at
home to foster a
successful recovery

 

 

 

15.More meaningful family
engagement and
increased job satisfaction

20.Early detection of
complications to prevent
problems that can lead
to readmissions
and penalties

 

 

 

For Family Caregivers

1. Improving communication with clinicians-
Communication and family caregiver preparation
improves because family caregivers feel more
empowered and engaged once they're formally
identified and recognized in their role. EHR-based
communication enhancements improve the consistency
of communication between family caregivers and the
multiple clinicians they receive information from.

2. Gaining more flexibility in their role-Because family
caregivers are being asked about what they can commit
to doing, they have the opportunity to work with
hospital staff to discuss ways to fill any gaps.

»

Decreasing family caregiver emotional, practical,
and financial strain-Family caregivers have less
anxiety when hospital staff educate them about
medical/nursing tasks, hospital processes, and

educational resources. They experience reduced strain
and disruption of daily life during and after a family
member's hospital stay; they are better equipped to
manage complex care and pain, which is a major issue
that carries an emotional as well as practical and
sometimes financial strain."

4. Facilitating continuity of care-A family may have
multiple family caregivers who share responsibilities.
A designated primary family caregiver can serve as the
main point of staff contact to help ensure continuity of
care before, during, and after a hospital stay. Continuity
of care during all transitions within and outside the
hospital helps ensure effective medication reconciliation
and accurate and complete communication of patient-
specific details, including values and preferences,
and prevents care and communication gaps, errors,
and omissions.

 
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

. Arranging appropriate support at home to foster a

successful recovery-Early and ongoing conversations
about postdischarge care enable staff and family
caregivers to collaborate to determine what will be
needed at home, such as the supplies and equipment
necessary to manage medical/nursing tasks. Staff can
provide referrals to community resources.

For Care Recipients

6.

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 remain at home long term.

Smoothing the transition from hospital to home or
long-term care setting-lt is 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. Better preparation for transitions
helps care recipients avoid additional hospitalizations.

. Getting the support they need when they go home

on hospice-Families often have little experience
managing the end of life. When a care recipient goes
home with hospice, staff members of the palliative care
and hospice teams work with families to support and
prepare them for the emotionally and physically
demanding road ahead.

Improving patient satisfaction-Survey comments
from one hospital led the organization to conclude that
"the CARE Act makes patients feel safer." The process
of actively including and assessing family caregivers
helps build rapport and create trust, which leads to
better interactions between staff and families, better
outcomes, and increased satisfaction for all involved.

10. Getting pharmacist support in the hospital-

Conducting medication reconciliations during the hospital
stay, ideally at each transition, promotes family caregiver
understanding of how to understand, manage, and
administer the medication regimen. This understanding
helps prevent frequent and common medication
errors, which can lead to avoidable readmissions.

For Clinicians

11.

12.

13.

14,

Becoming comfortable asking for family caregiver
information-The CARE Act provides justification for
asking older adults, in particular, to designate a family
caregiver, driving most care recipients to share the
information and have it recorded in the EHR. Staff can
be more effective when they know who the primary
caregiver is and when there are common expectations
among staff and families.

Streamlining staff communication with family
members-lIdentifying a primary family caregiver gives
hospital staff a single point of contact and prevents
time and energy spent on repeating the same
information to multiple family members. When large
families want to divide caregiving tasks among
multiple individuals, allowing extra time to designate a
primary family caregiver is helpful. The EHR should
distinguish between the primary family caregiver and
additional family caregivers, with the option to change
who serves as the primary caregiver over time.

Instructing the right person in postdischarge
care-lIdentifying the primary family caregiver allows
hospital staff to focus their efforts appropriately. Staff
report that rather than changing the substance of
what they teach family caregivers, they are doing a
better job of making sure the right person gets the
right training for each task. It is important to document
in the EHR specifics about what is taught to whom to
enable hospitals to track what family caregivers learn
and identify any gaps in their knowledge.

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
care recipient that signal a need for intervention.
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.

 
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

15. Increasing job satisfaction-Collaborating with

family caregivers gives hospital staff more context
about the care recipient's needs and enables them to
more effectively prepare the family caregiver, leading
to a better experience for all involved. Staff feel a
great deal of pride in preparing family members to be
successful at home.

For Health Care Organizations

16. Focusing on individuals-Instructing family members

who will perform medical/nursing tasks after a hospital
discharge is sound policy, and it's good for business.

Hospital leaders share that the CARE Act comes at a
good time and aligns with recent overall focuses in
health care delivery-including the Hospital Readmissions
Reduction Program (HRRP), a Medicare value-based
purchasing program; the national Hospital Consumer
Assessment of Healthcare Providers and Systems
(HCAHPS) survey of patients' perspectives of hospital
care; and Centers for Medicare & Medicaid Services
(CMS) requirements related to meaningful use of
certified electronic health record technology (CEHRT).

The CARE Act enables hospital leaders to provide a
clear and consistent framework for multidisciplinary
hospital staff to use as they help individual care
recipients achieve their care goals by supporting
family caregivers. This foundation takes into account
the need to assess family caregiver willingness,
availability, capabilities, and preparation for
postdischarge care at home. Implementation of the
legislation sets the stage for hospitals to train staff on
how to identify, engage, and prepare family caregivers.
lt promotes collaboration among the entire care team,
which includes the care recipient and family caregiver.

When people-especially older adults-experience
multiple hospital stays, consistency in their experiences
leads to loyalty, which prevents them from going to
other hospitals that may not have access to their
medical history in an EHR. Remaining with a single
hospital system rather than seeking a better experience
at another health care system leads to more consistent
care, which leads to better outcomes and fewer
postdischarge problems and avoidable readmissions.

17.

18.

19.

20.

Preventing discharge delays-Staff can provide and
reinforce information gradually throughout the hospital
stay-starting at admission-rather than delivering
large quantities of information to distracted family
caregivers during the flurry of discharge activity.

Improving quantitative success metrics-Hospital
leaders attribute improvements such as these at least
in part to the CARE Act:

m At one hospital, a nursing postdischarge follow-up
call program increased the nursing domain portion
of the HCAHPS patient experience score from
75.6 percent to 80.9 percent.

m At another hospital, results from the HCAHPS
question about whether people get the information
they need at discharge rose from 80 percent to
90 percent.

= A medication reconciliation program at one health
system decreased medication discrepancies by
80 percent.

m One health system's documentation of notifying the
family caregiver about discharge or transfer
increased from 42 percent to 72 percent, and its
overall compliance with the CARE Act grew from
8 percent to 92 percent.

Improving qualitative results-Health system
leaders and nurses across the country consistently
report anecdotally that identifying, engaging, and
instructing family caregivers results in a reduction in
readmissions and improved patient experiences.
Comments on one hospital's patient satisfaction
survey leads the hospital leaders to conclude that
changes resulting from the CARE Act make patients
feel safer.

Detecting complications early to prevent problems
that can lead to readmissions-Hospital staff
indicate that discharged individuals may be less likely
to have a complication at home that requires an
emergency department visit or hospital readmission
when family caregivers are fully prepared.

 
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

Implications of COVID-19

The COVID-19 (severe acute respiratory syndrome
coronavirus 2) pandemic has revealed the profound
importance of family presence on the health, well-being,
and recovery of individuals during a hospitalization.

The absence of family caregivers during the pandemic
underscores how much they normally contribute to day-to-
day care in the hospital. Care recipients are left with little
of the crucial emotional support family caregivers provide,
resulting in loneliness and other negative effects on their
mental and physical health.

Front-line staff are left to manage the day-to-day bedside
tasks family caregivers often handle, such as helping
those with a high fall risk to the bathroom, assisting

with ambulation to prevent the loss of muscle mass, and
encouraging patients to eat and maintain hydration. Staff
also do not have the benefit of family caregivers alerting
them about increasing pain or changes in mental status,
which is especially important when the care recipient has
dementia or delirium.

To address issues related to COVID-19, some health
systems do the following:

1. Change visitation policies to modify restrictions for
essential family members and end-of-life visits;

2. Modify in-person encounters to offer phone calls
during rounds, foster intentional in-person connections
during visits, increase home-visit safety, provide virtual
support groups, and coordinate outreach during and
after the hospital stay;

3. Adapt staffing models to redeploy staff to the busiest
areas, particularly to focus on connecting with family
caregivers;

4. Use telephonic and video technologies (with training
and tech support) to enhance communication of
instruction on postdischarge care; and

5. Deepen community partnerships to mitigate strains
families face, such as food insecurity and financial
difficulty, that affect their ability to provide adequate,
safe postdischarge care.

The timely launch of the Supporting Family Caregivers
Providing Complex Care publication series highlights a wide

variety of additional promising practices in family caregiver
support just when they are most urgently needed.

The Need

Family Caregiver Support Is Essential
for Today's Postdischarge Care

The CARE Act Addresses Challenges
Family Caregivers Face

The gap between the complex postdischarge care family
caregivers face and the preparation they receive to
manage that care was established in Home Alone: Family
Caregivers Providing Complex Chronic Care, the research
report published in 2012 by AARP and United Hospital
Fund and funded by The John A. Hartford Foundation.?

To address that gap, AARP designed the Caregiver Advise,
Record, Enable Act-now law in more than 40 states and
territories. The legislation is designed to support the 20
million family caregivers who must learn, often on their
own, to perform complex medical/nursing tasks at home
for a family member or friend who is discharged from the
hospital.* The name of the law and its specific provisions
vary by state, but the CARE Act generally requires that
hospitals take three specific steps to support family
caregivers:

1. Advise hospitalized individuals of their opportunity
to identify a family caregiver.
Patients and family caregivers often do not understand
that hospitals expect them to undertake postdischarge
medical/nursing tasks and other caregiving
responsibilities at home.

2. Record the family caregiver's name and contact
information in the EHR (with patient permission).
Clinicians across disciplines need easily accessible
contact information to facilitate coordinated
communication with family caregivers in preparation
for discharge.

For additional details about the importance of family
caregiver data in the EHR, 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.

 
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

3. Enable family caregivers by providing as much
notice as possible about discharge timing,
consulting with them about the discharge plan,
discussing their role in carrying out that plan, and
instructing them on the medical/nursing tasks they
will handle at home.

More than 8 in 10 family caregivers receive less than
24 hours' notice of discharge from the hospital.° More

~AARP'

than half are given either no notice or less than

12 hours' notice.® This leaves family caregivers
without enough time to prepare equipment,
medications, and supplies at home and make
arrangements to be available to provide what can be
around-the-clock care.

This CARE Act map shows the more than 40 states and
territories that have passed the legislation.

The Caregiver Advise, Record, Enable (CARE) Act

The CARE Act is a commonsense solution that supports family caregivers when their loved

ones go into the hospital, and provides for instruction on the medical tasks they will need

 

to perform when their loved ones return home.

   
 

[EWASHINGTON, D.C.

@B PUERTO RICO

oe
US VIRGIN ISLANDS

 

CARE Act goes into effect:

 

7/1/15; Washington, 6/9/16; Washington, DC, 7/6/16; West Virginia, 6/8/15; Wyoming, 7/1/16

Alaska, 1/1/17; Arkansas, 7/22/15; Arizona, 1/1/21; California, 1/1/16; Colorado, 5/8/15; Connecticut, 10/1/15; Delaware, 1/1/17;
Hawaii, 7/1/17; Illinois, 1/27/16; Indiana, 1/1/16; lowa, 7/1/19; Kansas, 7/1/18; Kentucky, 6/29/17; Louisiana, 8/1/16; Maine,
10/15/15; Maryland, 10/1/16; Massachusetts, 11/8/17; Michigan, 7/12/16; Minnesota, 1/1/17; Mississippi, 7/1/15; Missouri,
8/28/18; Montana, 10/1/17; Nebraska, 3/30/16; Nevada, 10/1/15; New Hampshire, 1/1/16; New Jersey, 5/12/15; New Mexico,
6/17/15; New York, 4/23/16; North Dakota, 8/1/19; Ohio, 3/21/17; Oklahoma, 11/5/14; Oregon, 1/1/16; Pennsylvania, 4/20/17;
Puerto Rico, 12/31/15; Rhode Island, 3/14/17; Tennessee, 6/6/19; Texas, 5/26/17; Utah, 2/10/16; Virgin Islands, 3/30/16; Virginia,

a CARE Act Now Law

 

 

Updated on 10/21/2020

Coping with Strain, Worry about Making Mistakes,
Pain Management, and the End of Life

lt's not just logistics that family caregivers must

manage. The weight of the responsibility and worries of
postdischarge care can leave family caregivers feeling
overwhelmed to the point of being unable to cope with the
tasks before them. Those among the most overwhelmed

are new family caregivers, those providing complex care,
and those caring long term for someone with dementia."

Consider these statistics from Home Alone Revisited:
Family Caregivers Providing Complex Care, a 2019 special
research report created by the founders of the Home
Alone Alliance®™ and funded by AARP Foundation and The
John A. Hartford Foundation:®

 
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

Half of family caregivers perform medical/nursing tasks.

e About half of those family caregivers are afraid of
making a mistake in their family member's care. Some
racial/ethnic groups are markedly more worried than
others. Multicultural family caregivers are more likely
to experience strain and worry about making a
mistake, regardless of income.

e Almost half feel down, depressed, or hopeless several
times per week, compared with about a quarter of the
general population of older adults. Twenty percent have
no one to call for help; these caregivers are at higher
risk for strain and depression.

e Seven out of 10 face the practical and emotional
strain of managing pain, which carries an emotional as
well as practical and sometimes financial strain.
Witnessing the suffering of a family member is
intensely stressful. In addition to the heartbreak of
often being unable to ease pain, caregivers sometimes

need to cause further pain to help-by giving
injections, removing bandages from wounds, or
performing other invasive procedures. Identifying and
easing the cause of pain can be a difficult process.
The result is family caregivers coping with the
additional strain of watching prolonged suffering.

Emotional strain is particularly deep for family caregivers
managing pain that is severe. Pain medication requires
constant monitoring and frequent adjustments,
making pain management an ongoing unpleasant
focus and adding to the stressful feeling of the loss of
control for both the person being cared for and the
family caregiver.

Many family caregivers must learn the intricacies of
obtaining and administering opioid pain medications.
The current concern about the overprescribing of
opioids has led to difficulties in obtaining adequate
pain relief, particularly for people whose chronic pain
has been managed with opioids over time.

Family caregivers need guidance about what palliative care
means and how it differs from hospice care. They need
help understanding the shift from curative to comfort care.
They need to have their expectations set about hospice
before it is needed so they can take advantage of it as
early as possible-with peace of mind. They especially
need help learning the signs and symptoms of pain so

that when the care recipient is unable to communicate at
the end of life, the caregiver can feel confident they are
providing adequate pain relief.

Many families do not have experience with the physical
aspects of the dying process and do not realize how

hard it is to manage the end of life. Even after families
understand the philosophies and mechanics of palliative
care and hospice, they are often not emotionally prepared
to handle the day-to-day activities of hands-on care near
the end of life. They worry about making a mistake that
can precipitate death, especially when managing opioid
medications. The anxiety and stress can lead to new or
exacerbated health issues for the family caregiver.

What Family Caregivers Want

The CARE Act aims to help hospital staff determine the
context and goals of care-rehabilitation, management of
serious illness or injury, or palliative or end-of-life care-
and help mitigate the distress family caregivers endure by
giving them the guidance, instruction, and support they
need to provide effective postdischarge care at home.

When asked what would make it easier to perform
medical/nursing tasks, the most common response from
family caregivers across all tasks is more and/or better
instruction-including additional exposure to the content,
practice with supervision, written instructions, visual
instruction, videos, consistent instructions, and a phone
number to call with questions.

One hospital's call center that identifies the issues

care recipients inquire about after discharge found that
questions about medication management are the primary
reason for inbound calls.

 
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

 

CARE Act Benefits and the Family
Caregiver Experience: A Vignette

The example below illustrates an ideal family caregiver

experience in the hospital.
€s) for coronary artery bypass graft surgery and

preadmission testing. The hospital
admissions department calls her to ask, "Who will help
you at home after the hospital stay?" Shanice's son,
Tyrone, agrees to help. Shanice and Tyrone go to the
hospital a few days before the surgery. Shanice has
preadmission testing and signs paperwork consenting
to Tyrone's access to her health information. Tyrone
participates in a family caregiver readiness screening
regarding his willingness, availability, and preparation
for postdischarge care. He receives an overview of his
role as a family caregiver, which includes a discussion
of the medications Shanice will be taking, wound care,
and how the discharge process works.

Example: Shanice's physician schedules her

The information from the screening is entered into the
EHR on the system's family caregiver dashboard, which
can be accessed by all interdisciplinary hospital staff
caring for Shanice and preparing Tyrone to manage
medical/nursing tasks for her at home. Flags in the
system trigger outreach from a social worker to
address barriers to successful family caregiving
identified during the screening process.

Throughout the hospital stay, clinical and social support
staff members record additional information and
educational materials they give Tyrone at the bedside and
by phone about wound care, medication management
and administration, what good progress looks like,
warning signs of complications, how to handle an
emergency, and more. The information Tyrone receives

is appropriate for his language, race/ethnicity, culture,
literacy level, and Internet access. He also receives
information about how to manage the cost of medications,
supplies, and equipment and how to get them in place
before Shanice returns home.

The whiteboard in Shanice's room serves as a
communication hub and has a phone number Tyrone
can call with questions during and after the hospital
stay. It lists daily updates about Shanice's anticipated
discharge date and explains how to access her health
information through the patient portal. When Tyrone
cannot be at the hospital, Shanice or a nurse texts
photos of the updated whiteboard to Tyrone.

Tyrone's time at the hospital is limited by his job and
family responsibilities. A nurse makes appointments with
him that work for his schedule for continued instruction
using the teach-back educational method to confirm
Tyrone's understanding, allow him to practice tasks
over time with supervision, and provide opportunities
to ask questions.

The discharge date is confirmed 48 hours in advance,
allowing Tyrone to schedule time off work and finalize
preparations for Shanice's care at home. During the
discharge process, Tyrone receives a month's supply of
all of Shanice's medications. Tyrone, a social worker,
and a nurse meet to reinforce the information Tyrone
received since the preadmission visit and confirm
connections with community resources for ongoing
support. The day after discharge, a nurse calls Tyrone
to check on Shanice's recovery.

Shanice recovered safely at home. She and Tyrone both
felt more prepared and confident and less anxious and
overwhelmed than they had expected. They reported
that their entire hospital experience could not have
been better.

 
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

Quantifying the Benefits

Documenting What Success Looks 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 was not universal identification
of the direct link between family caregiver engagement
and 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 for the
next phase of care at home.

 

Resolving Challenges of CARE Act Implementation

Below are examples of challenges to implementing the
CARE Act and how hospitals overcome them.
oe y Challenge: Front-line staff say, "We already do
Ti what the CARE Act requires."

@

Resolution: Focusing on the requirements of
the CARE Act helps hospitals recognize the
need to standardize their identification and
support of family caregivers. Initial concerns diminish
when Clinicians hear poignant personal stories about
the existing gap between the information family
caregivers who face extra challenges receive at hospital
discharge and the care they need to provide at home.
Listening to patient stories during patient and family
advisory council meetings or in focus groups of
community members reinforces the need for staff to
consistently identify and provide detailed information to
family caregivers. Content from the AARP Home Alone
report creates additional awareness of process gaps."°

Staff Training Practices

Challenge: When leaders seek critical
feedback about CARE Act implementation, the
main concern they hear from staff is related to
fitting additional training into busy schedules.

eo m
mi
e Resolution: Positive feedback after the
training indicates that staff accommodate the
training because they want and need the
information so they can more deliberately include
family caregivers in practices and workflows.

ee Challenge: Some hospitals experience high

iT turnover, and new hires require training to
understand the strategy, goals, and tactics of

family caregiver guidance, support, and instruction.

Resolution: Modifying staff onboarding
training to include training on Care Act
requirements is a short-term effort that
becomes self-sustaining in the long term.

it
Communication Practices

Challenge: Culturally appropriate materials in
the language of the family caregiver are not
always available.

ee by
mh
e Resolutions: Understand the needs of the
populations each hospital serves and develop
or obtain culturally appropriate materials. For
example, one hospital uses tablets to
videoconference with live translators when the
appropriate in-person translator is not available. Others
provide plain-language placards listing local and/or
national family caregiver resources in family waiting
areas and/or patient rooms, on-demand videos via the
patient portal, online videos accessible before and after
discharge, and DVDs. Make these resources available in
the languages and consistent with the culture of those
living in the local service area. Input from the patient
and family councils can enhance the appropriateness
of materials.
@ Challenge: Discharge information is
| voluminous and overwhelming.
@

if
Resolutions: Use simplified language,
graphics, and formats to create the most
concise and easy-to-understand material.
Outbound calls after discharge offer family
caregivers the opportunity to review the content,
understand its importance, and determine how to
address barriers to following the instructions.

 

 

10
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

ee Challenge: Poverty and low health literacy are

| barriers to family caregiver preparation,

particularly for those caring for someone with

a high-risk condition. One health care system serves a
community that has a low rate of literacy, and about a
third of residents in the community are not English
speakers. Communication challenges in rural areas
include geographic and transportation barriers and
unreliable internet availability.

Resolutions: Use existing channels to involve
social workers and interpreters. Modify EHR-
based patient health literacy screening tools
for use with family caregivers. Secure funding
from nonprofit organizations for taxi vouchers and
develop or find other resourceful means of helping

family caregivers by partnering with community agencies.

Challenge: Caregivers are not always
available during the day to receive instruction
in the hospital.

eo by
mi
e Resolutions: Provide instruction during all
shifts throughout the hospital stay as needed.
Allow the patient to record bedside instruction
to share with the family caregiver. Consider
performing procedures at a time of day when the family
caregiver can be present. Make specific appointments
with the family caregiver to receive instruction.

Transition in Care Programs and
Postdischarge Support

Challenge: Discharge delays occur when
family caregivers are not available for
instruction at discharge.

ee by
mh
. Resolutions: Set a mutually convenient time
to review discharge instructions or arrange
for home health to provide family caregiver
instruction after discharge. Promote the
option of ordering skilled nursing visits that take place
after discharge.

ee Challenge: Hospitals need additional case
| managers to provide navigational support to
family caregivers and help them coordinate
with learning medical/nursing tasks and arranging

postdischarge support.
takes these costs into account can promote

él
the funding of services and supports that

offset costs in other areas of the budget, such as
unreimbursed readmissions.

Resolution: Quantifying the costs of not
providing this support and fiscal planning that

 

ee Challenge: Some patients simply do not have
| an individual who can fill the role of family

caregiver or are unable to name a family caregiver

because they have dementia or are unconscious.

@

declined" or "Unable to respond" on a
documentation screen; the case management

or social work department automatically receives a

request for a consult to assist such patients and those
who do not have a family caregiver.

Resolution: At many hospitals, a nurse can
select an EHR option such as "Patient

Approaches to Making Practice
and System Changes

ir

if

Challenge: Hospitals must decide how to begin
making changes to long-standing processes.

Resolutions: Some hospitals start changing
processes in one or two units; some begin with
a systemwide approach. Successful changes
include communications about culture change
from senior leaders.

Challenge: Family caregiver education is not
documented in one place in the EHR.

ee I
Mi
e Resolution: Working with the EHR provider
or internal IT team to reconfigure the display
of family caregiver data, assessment of
readiness, and instruction into a more easily
accessible view enhances staff interactions with family
caregivers and ensures professionals know where to

find the information.
ee . . . .
aT discharge process (primarily nurses, discharge
| planners, and case managers) note concerns
that new processes would be restrictive and create an
additional burden for already maximized workloads.
él
workflow, streamlining processes, and
clarifying and standardizing the language staff
use to identify family caregivers.

Challenge: Staff members involved in the

Resolution: Hospitals manage the change
process by examining the discharge planning

Pharmacy Innovations
ee Challenge: There are not enough resources to
a provide the ideal level of medication support to

every family caregiver.

 

 

11
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

 

 

A Resolutions: Hospitals provide medication
reconciliations and instruction throughout
the hospital stay at times convenient for
pharmacists and family caregivers, giving

care recipients and family caregivers a greater

level of understanding about how to manage
medications and confidence in doing so. Hospital staff
anecdotally report significant decreases in medication
discrepancies by having a standard process. Hospitals
also scale approaches over 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.
ee
Ti often cannot process information about
| medication regimens because they are caught
off-guard about the level of responsibility they face or
are too anxious to digest information.
e
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.

Challenge: At discharge, family caregivers

Resolutions: Provide instruction and support
throughout the hospital stay. Physicians

Screening Practices

Challenge: There are not enough resources
to provide the ideal level of support to every
family caregiver.

ee hy
mh
e Resolution: Hospitals increasingly innovate

to provide instruction to support family
caregivers. To put supports in place during

the hospital stay and afterward, some health

care systems develop close working relationships or

partnerships with community-based organizations that

focus on a specific population or condition.

Addressing Needs of Specific Populations
Challenge: Family caregivers often cannot
process information well in the hospital

ee
Mi setting. Issues include language barriers and
varying levels of literacy and health literacy.
@
increasingly write orders for home health
support so patients and family caregivers
receive skilled nursing instruction at home shortly
after discharge. Instruction can be more effective in a
calm, familiar setting after the peak of a medical crisis.
This path can be particularly helpful for patients with

Medicare and/or Medicaid, who may qualify to receive
skilled nursing support at home at no charge.

i
e
the 80 percent of their patients who go home
with hospice. They also allow time for staff to
talk with families about creating documents such as
provider orders for life-sustaining treatment (POLST)
and do-not-resuscitate/do-not-intubate (DNR/DNI)
orders and advance directives to help the individual,
family members, and care team have a common

understanding of end-of-life wishes.
ee . . . .
qi awareness in the community and sometimes in

| hospitals about how to manage care for people
with dementia. The information gaps in the community
can result in unnecessary hospitalizations.

Resolution: At some hospitals, prescribers

Challenge: It is difficult to convince people
who have a life-limiting condition to create
advance care planning documents.

Resolution: The palliative care team at one
hospital conducts family care conferences for

Challenge: There is a significant lack of

Resolution: One health care system partners

with multiple community organizations that

focus on dementia. Social work staff developed

and launched a seminar on aging that was
open to the public. The traditional view of family is
changing to include neighbors and friends-especially
for older adults-so they also encourage attendance by
friends and neighbors of those with dementia.

 

12
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

Additional Information

Helpful Resources

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 managing
incontinence. These resources, many of which are
available in both English and Spanish, are free of

charge to all. Visit aarp.org /nolongeralone.

Education and Tools 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 A/one

Revisited: Family Caregivers Providing Complex Care, a

2019 special research report by the Home Alone Alliance."

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"3

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 that 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.

Theme Papers in This Series

e Transitions in Care and Hospital Discharge Practices
to Improve Patient and Family Engagement: 16 Ways to
Prepare and Support Family Caregivers (PDF)

e Approaches to Making Practice and System Changes
to Improve Patient and Family Engagement: 12 Ways
Hospitals Integrate Family Caregiver Support (PDF)

e Pharmacy Innovations to Improve Patient and Famil
Engagement: 10 Ways Hospitals Help Family Caregivers
Prepare to Manage Medications (PDF)

® Screening Practices to Improve Patient and Family
Engagement: 5 Ways Hospitals Prioritize Family
Caregivers Who Need Extra Support (PDF)

Additional 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

r https://www.aarp.org /politics-society/advocac
caregiving-advocacy/info-2014 /aarp-creates-model-state-
bill.html. To learn more about the Home Alone Alliance,
visit www.aarp.org /nolongeralone.

 

13
Benefits of the Caregiver Advise, Record, Enable (CARE) Act

 

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@aarp.org; @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

42 Susan C. Reinhard et al., Home Alone Revisited: Family Caregivers

Providing Complex Care (Washington, DC: Home Alone Alliance, 2019),

h rp.or, i/info-2018/home-alone-family-caregivers-
roviding-complex-chronic-care.html.

3 Susan C. Reinhard et al., Home Alone: Family Caregivers Providing

Complex Care (Washington, DC: AARP Public Policy Institute, 2012),
h www.aar

h 2m -fami regiving /info-1 =2 12

 

4-6 Susan C. Reinhard et al., Home Alone Revisited.

7 Janice F, Bell, Robin L. Whitney, and Heather M. Young, "Family
Caregiving in Serious Illness in the United States: Recommendations
to Support an Invisible Workforce," Journal of the American Geriatrics
Society 67 (2019): $451-56.

8,9 Susan C. Reinhard et al., Home Alone Revisited.
'© Susan C. Reinhard et al., Home Alone.
11 12 Susan C. Reinhard et al., Home Alone Revisited.

'8 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-to-

the-care-act.html.

Supporting Family Caregivers Providing Complex Care
Theme Paper #1010, November 2021
© AARP PUBLIC POLICY INSTITUTE
601 E Street, NW
Washington, DC 20049

Ei Follow us on Twitter

Fi Follow us on Facebook

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

~AARP

Home Alone Al

 

iance'

a collaborative from AARP

 

14