Nurs Admin Q

Vol. 46, No. 4, pp. 309–315

Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.

Finance Matters in Nursing Leadership

The Business Case to Care for
Persons With Serious Illness
Using Home-Based and
Community-Based Palliative
Care
Mary Lynne Knighten, DNP, RN, NEA-BC

The number of persons with serious illness in America has dramatically increased over the last
half decade, while the cost for health care quadrupled. The trajectory of these chronic conditions
can mean declining health, frequent emergency department visits and more hospitalizations, driv-
ing up health care costs, and reducing quality of life. Palliative care, a viable solution to reducing
disease burden, improving quality of life, and decreasing costs, has been offered in hospitals for
many years and is now a standard of care and practice. Palliative care can be provided while con-
comitantly offering disease-targeted treatment. Home-based and community-based palliative care
models offer new and innovative avenues for the provision of palliative care outside the hospi-
tal walls. Definitions to differentiate between palliative care, hospice, and long-term services and
support will be presented. How to make the business case for home-based or community-based
palliative care will be made, with insights, resources, and tools for calculating the return on invest-
ment. The role and competencies for palliative care nurse leaders will be explored. Key words:
business case, community-based, home-based, palliative care, return on investment, serious
illness

BACKGROUND: SERIOUS ILLNESS AND

Author Affiliation: Doctoral Programs Department,
School of Nursing, Azusa Pacific University, Azusa,
California.
The author expresses heartfelt thanks to the stellar in-
terdisciplinary palliative care team with whom she
worked and from whom she learned. They designed
and delivered innovative supportive care to persons
with serious illness in their home. Project director: Ka-
trina Ling, palliative care nurse practitioner: Cecile
Kokozian, case management director: Crystal Burrous,
palliative care social worker: Annabelle DelaTorre,
and palliative care physicians: Nicholas Jauregui and
Harding Young.
The author is a reviewer for NAQ.
The author declares no conflict of interest.
Correspondence: Mary Lynne Knighten, DNP, RN,
NEA-BC, Doctoral Programs Department, Graduate Di-
vision, Azusa Pacific University, 701 E. Foothill Blvd,
Azusa, CA 90702 (knightenmarylynne@hotmail.com).
DOI: 10.1097/NAQ.0000000000000547
CHRONIC DISEASE IN AMERICA
In 2017, a task force representing sev-
eral national institutes and foundations on
the Roundtable on Quality Care for Peo-
ple with Serious Illness at the National
Academies of Sciences, Engineering, and
Medicine (NASEM) published a discussion
paper Community-Based Models of Care De-
livery for People With Serious Illness, which
included data from the Institute of Medicine
(2015) and NASEM (2016) estimating that
there were 45 million Americans living with
1 or more chronic conditions that limit func-
tion and are unlikely to improve.1-3 This
represented only 14% of the US population;
309

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310 NURSING ADMINISTRATION QUARTERLY/OCTOBER–DECEMBER 2022
however, these persons with serious illness
comprised 56% of all health care expendi-
tures, nearly $1 trillion.1 As of May 2022,
the Centers for Disease Control and Preven-
tion’s National Center for Chronic Disease
Prevention and Health Promotion (NCCD-
PHP) reports that 6 in 10 adults in the United
States have a chronic disease, 4 in 10 have
2 or more chronic conditions, and the an-
nual health care costs of chronic disease
top $4.1 trillion.4 In less than a decade, the
costs for chronic illness care have more than
quadrupled.
THE CURRENT PROBLEM
Prior to the COVID-19 pandemic, the lead-
ing causes of death and disability in the
United States and the conditions contribut-
ing most to the high annual cost of care
are heart disease and stroke, cancer, chronic
lung disease, Alzheimer disease, diabetes, and
chronic kidney disease.4 These diseases come
with complex, costly treatment packages and
often require frequent visits to the emer-
gency department (ED) and admission or
readmission to the hospital for care. Although
palliative care for hospitalized persons with
serious illness has seen increased utilization
in the last number of years and could reduce
the number of acute care episodes, it remains
significantly underutilized as a care manage-
ment approach. Palliative care can provide
much needed support for those with life-
limiting and life-threatening health conditions
who continue to seek disease-targeted treat-
ments, as well as those for whom no further
treatment to achieve cure is possible.
DEFINITIONS
Many people—patients and health care
professionals alike—are confused by the dif-
ference between palliative care, hospice, and
long-term supportive services. Let us start
with serious illness, which is a “health
condition carrying a high risk of mortal-
ity and either negatively impacts a person’s
Copyright © 2022 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
daily function, or quality of life.”5(p4) Serious
illness, such as the chronic conditions men-
tioned previously, has a disease trajectory that
worsens over time and ultimately negatively
impacts the person living with the condition,
as well as his or her family and caregivers.
Serious illness can be approached with both
disease-targeted treatment and palliative care.
Palliative care is specialized medical care
designed to support persons with serious ill-
ness by providing symptom management and
relief from the stress and suffering of seri-
ous illness. Palliative care can be provided by
a team of specially trained health care pro-
fessionals at any stage, at any age,5 and for
many chronic conditions that result in seri-
ous illness, side by side with disease-targeted
treatment.
Hospice focuses on care versus cure and
may be delivered in the patient’s home,
though hospitals, long-term care facilities,
and freestanding hospice centers are also
common models of care delivery. Hospice
care is covered by Medicare, Medicaid, man-
aged care plans, and health maintenance
organizations,5 though curative treatment
generally must be discontinued. Hospice,
while reserved for end-of-life care, often can
be transitioned earlier, especially if palliative
care has been used. Many patients with se-
rious illness may not be eligible for hospice
and are not open to the idea, so palliative
care is a more palatable option. According to
the Center to Advance Palliative Care (CAPC),
hospices represent a majority of 50% of
community-based palliative care providers. In
a recent Hospice News and Axxess survey, ap-
proximately 72% of hospice leaders indicated
that the value-based payment model influ-
enced their decision to offer palliative care.6
Care provided in the home, community-
based settings, or facilities is referred to as
Long-Term Services and Supports (LTSS) and
is designed to help (often older) people live
more independently when their health con-
ditions impact their personal function. This
support can include assistance with health
care needs; activities of daily living, such
 Home-Based and Community-Based Palliative Care
as eating, bathing, cooking, and medication
management; and even money management.5
The new model of Community-Based
Palliative Care addresses the needs of per-
sons with serious illness who are not
hospitalized, nor hospice-eligible in both tra-
ditional and nontraditional arenas. Settings
for community-based palliative care can be
a person’s home, dialysis center, primary
care or specialty physician offices, cancer
centers, assistive living and long-term care
facilities, home care agencies, home-based
medical practices,5 and other community-
based settings such as senior centers, faith
communities, and food banks. Home- and
community-based palliative care services are
effective mechanisms for persons living with
serious illness to obtain help, stay in their
homes, and avoid transitioning to a facility for
care. These models are extremely person- and
family-centered, partnering with the person
and family to comprehensively incorporate
their goals and priorities3 in a holistic way.
MAKING THE BUSINESS CASE FOR
HOME- AND COMMUNITY-BASED
PALLIATIVE CARE
Palliative care has, for a number of years,
been regarded as the standard of practice
to reduce futile care and improve quality of
life for patients with serious life-threatening
and life-limiting illness. Palliative care teams
are now the rule rather than the excep-
tion in US hospitals. “Services are available
in 94% of hospitals with more than 300
beds, and in 72% percent of hospitals with
more than 50 beds.”7(p8) Palliative care is
covered by government payors, included in
major health plan quality programs, and has
demonstrated growth in licensure require-
ments for number of states. The goals have
been to decrease intensive care unit lengths
of stay, prevent invasive or aggressive treat-
ment of questionable value, improve quality
of life, and reduce overall costs of care.
Hospital-based palliative care interventions
may improve patient outcomes, health care
utilization, and costs, according to Luta and
Copyright © 2022 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
311
colleagues,8 who evaluated the available evi-
dence on the economic value of palliative and
end-of-life care interventions across various
settings. The researchers found that pallia-
tive care consultations during inpatient stays
resulted in fewer hospitalizations, less read-
missions, and reduced costs, and there was
some evidence that effective advance care
planning reduced resource use.8 However,
the strongest evidence found in the review of
cost-effectiveness suggests that home-based
palliative care interventions offer opportuni-
ties for “high potential efficiency gains for
the health system through a decrease in to-
tal direct healthcare costs and resource use
and improvements in patient and caregiver
outcomes.”8(p18)
One model of community-based serious ill-
ness care in South Carolina offers a range
of services, with noteworthy intersections
of primary and palliative care for patients
with serious illness, who have not only com-
plex and comorbid medical needs but also
palliative care needs, such as symptom man-
agement, psychosocial and spiritual support,
and advance care planning.9 Based on chart
review of patients enrolled in the community-
based serious illness care program, patients
were screened for pain, anxiety, constipation,
and agitated delirium, and treated as appro-
priate. The low rate of hospital deaths seems
to have been the result of high-quality ad-
vance care planning in 63% of the patients.9
Although the economic benefits of this study
were not directly studied and the generaliz-
ability of the findings is limited due to 1 study
site, it provides an exemplar of comprehen-
sive integrated primary and palliative care for
patients with serious illness.
Mathew and colleagues10 conducted a sys-
tematic review of palliative care models from
medical and economic databases; they in-
cluded 2 modeling studies from the United
States and England and 3 economic eval-
uations from England, Australia, and Italy.
Two of the studies compared home-based
palliative care with usual care and 1 study
compared home-based palliative care with
no care. All studies concluded that palliative
312 NURSING ADMINISTRATION QUARTERLY/OCTOBER–DECEMBER 2022
care was more cost-effective than usual care
or no extra care to patients, and 3 stud-
ies reported that home-based palliative care
was cost-effective when compared with usual
or no care. Quality outcomes demonstrated
less ED visits, fewer hospital admissions, and
increased days at home.10
The CAPC is the foremost authority in
the nation on palliative care education, pro-
grammatic resources, value, and return on
investment. Data show that palliative care re-
duces symptom distress by 66% and improves
quality of life, which lasts several months af-
ter implementation, and 93% of patients who
experience palliative care are likely to recom-
mend it to others.11 Furthermore, palliative
care has been shown to reduce avoidable
spending and utilization in all settings by re-
ducing ED visits by 35%, admissions by 50%,
readmissions by 48% (with an associated 28%
reduction in cost per day), transfers from
skilled nursing facilities to ED or hospital
by 43%, and decreasing home-based costs by
35%.11 The leaders at CAPC make a bold state-
ment: “Palliative care needs to be available in
all settings outside hospitals—in medical of-
fices and clinics, in post-acute and long-term
care facilities, and in patient homes.”7
To assist nursing leaders, hospitals, and
health systems make the business case for
home-based palliative care, the CAPC offers a
number of resources for members and some
for nonmembers, including tool kits to en-
gage stakeholders, spreadsheets for modeling
and pro forma development, and an ROI
Calculator for Home-Based Palliative Care.
The ROI calculator (for CAPC members only)
is used to calculate the return on invest-
ment a payer might experience by supporting
home-based palliative care services. By in-
putting the (a) number of patients expected
to serve per year, (b) program costs negoti-
ated with the payor, and (c) average number
of months patients will be followed (average
LOS), the total program costs to the payor are
calculated by multiplying “a” × “b” × “c.”
Programmatic savings are based on evidence
in the literature (cited in the tool). Adjust-
ments are made for variability, both gross
Copyright © 2022 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
and net savings are calculated, and the ROI
is based on net savings divided by program
costs.12
INNOVATIONS FOR HOME- AND
COMMUNITY-BASED PALLIATIVE CARE
The guiding principles of community-
based palliative care incorporate (1) person-
and family-centered care, (2) shared deci-
sion making to support patient and family
goals, (3) comprehensive coordinated care,
(4) accessibility, and above all (5) value. For
community-based palliative care programs to
be sustainable over time, they must pro-
vide value, maintain a viable financial model,
and demonstrate the provision of high-quality
care (evidenced by measures of care out-
comes and patient and family perceptions),
while managing costs.3 One mechanism used
to manage costs, particularly in rural and un-
derserved or underresourced areas, involves
leveraging technology. The COVID-19 pan-
demic forced the issue of telehealth for
palliative care quickly and decisively, result-
ing in many benefits. Some benefits included
r high patient satisfaction (convenient and
time-saving);
r enhanced ability to involve multiple fam-
ily members in conversations and case
conferences;
r improved patient appointments
attendance—no-show rates fell to
nearly zero;
r greater ability to assess the home environ-
ment;
r increased opportunities to connect with
patients for a quick check-in; and
r expanded access to palliative care
overall.13
Challenges encountered were lack of Wi-Fi
in the home, inability to adequately con-
duct a physical assessment, limitations of
prescribing controlled substances, and need
for an effective referral system if in-person
evaluation or care is needed.13
Telehealth can be a cost-effective mech-
anism to meet patient needs, particularly
when operating under fixed or capitated
 Home-Based and Community-Based Palliative Care
payment models. The CAPC has an ex-
cellent Telehealth Start-up Guide, which
addresses how to provide telepalliative care
through live synchronous video, store-and-
forward asynchronous recordings, remote
patient monitoring, mobile health (mHealth),
and telephone communication mechanisms
that can be used for both provider-to-patient
and provider-to-provider communication.14
The guide describes 6 elements necessary
to integrate telehealth into a palliative care
service. These are (1) selecting a (Health
Insurance Portability and Accountability Act
[HIPAA]-compliant) videoconferencing plat-
form; (2) ensuring the hardware, software,
and connectivity works; (3) conducting train-
ing for staff, providers, patients, and families
to prepare for the first visit; (4) assessing situ-
ational context to determine whether goals of
care can be accomplished via telehealth; (5)
encouraging and facilitating the patient and
family encounters; and (6) billing accurately
for services. Legislation passed in Congress
and some state regulations are making it pos-
sible to meet palliative care patient needs
remotely while being reimbursed for those
services. “Medicare fee-for-service covers
billable clinicians (physicians, nurse prac-
titioners, and/or physician’s assistants who
are Medicare-certified” (section 6: Billing) and
Medicaid reimbursement varies by state.14
Another mechanism to manage costs is to
partner with reliable and dependable home
health agencies. The agency must have staff
that can visit the patient at home 24/7 and
administer care and treatment, rather than
talking with the patient or the family over the
phone and triaging the patient to the ED. This
is harder to achieve than one first thinks. It is
included here as an innovation, since it is not
a well-established community standard.
In a systematic review and thematic syn-
thesis conducted by Juhrmann and colleagues
in 2022,15 the concept of using paramedics
to bridge the gap in delivering end-of-
life and palliative care in community-based
settings was explored. Three key themes
emerged: “(1) Broadening the traditional role,
(2) Understanding patient wishes, and (3)
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313
Supporting families.”15(p4) The authors con-
cluded that paramedics are a highly skilled
workforce capable of helping deliver pallia-
tive and end-of-life care to people in their
homes as part of an integrated delivery
system to prevent avoidable ED visits and
acute hospital admissions, particularly for
palliative emergencies. Important enablers
emphasized in the review include improv-
ing communication and support structures
with interdisciplinary teams, targeting spe-
cific palliative care training for paramedics,
engaging in patient and family care partner-
ships, and designing palliative care clinical
practice guidelines to expand paramedic
scope of practice.15 It is interesting to note
that paramedic care has been piloted in CMS
Hospital at Home demonstration projects and
initiatives.
PROMOTING NURSE LEADERSHIP IN
HOME- AND COMMUNITY-BASED
PALLIATIVE CARE
As the need for palliative care grows,
so does the necessity for palliative care
nurse leaders and their need for mentoring,
knowledge acquisition, skill development,
and guidance for professional career growth.
In a focus group jointly held by the CAPC
and the Hospice and Palliative Care Asso-
ciation (HPCA) at the 2018 CAPC Annual
Conference, nurses who led palliative care
programs discussed challenges and the need
for resources to further support them in their
unique roles. The challenges they identified
included
r role delineation to maximize leader-
ship, nursing education, and mid-career
training; promote nursing scope of prac-
tice understanding within palliative care
teams; balance clinical and leadership re-
sponsibilities and promote collaboration;
r restricted collaboration where work-
ing with physicians and administrators
did not include optimal teamwork and
shared leadership;
r limited resources, which include direc-
tives to start programs without adequate
314 NURSING ADMINISTRATION QUARTERLY/OCTOBER–DECEMBER 2022
dedicated administrative time and being
expected to lead in addition to managing
full clinical workloads; and
r leadership knowledge gaps including
business principles (understanding data
and resources, using data to make a
business case, creating business plans,
and executing strategies), reimburse-
ment terminology (eg, value-based care
and alternative payment models), change
management, service line delivery mod-
els, and project management within
health care initiatives.16
According to Cohn et al,3 to achieve the
guiding principles of community-based pallia-
tive care programs for persons with serious
illness, a set of core competencies is re-
quired. Program success is incumbent upon
accurately identifying the target population,
including the use of screening tools that are
specific and sensitive, and defining criteria
for program inclusion and exclusion. An in-
terdisciplinary team that includes some of
the following: physicians, nurses, social work-
ers, rehabilitation therapists, chaplains, home
health aides, and community health work-
ers is imperative to provide care for people
with serious illness. Patients and their family
caregivers are considered integral members
in team-based care. Care plans must be goal-
based and communication and support
must be clearly defined and used to ensure
that care is coordinated and patients and
families are educated.3 Family and caregiver
training is a significant part of supporting
persons with serious illness, so training them
to perform care and even administer nurs-
ing tasks is necessary. Nursing care includes
assessment of symptoms and evaluation of
interventions to achieve successful symp-
tom management. This includes medication
management for optimal disease control to
promote quality of life and patient safety.3
Symptom and medication management are 2
key strategies to allow patients to manage
at home rather than going to the ED or the
hospital.
Assessing social determinants of health
and mitigating risks is particularly important
in high-risk and low-income populations.
Copyright © 2022 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Partnering with other social service agencies
can bridge the gaps in services and linkages.
Arrangements for accessibility, including 24/7
care and anticipating transitions of care,
provide smoother patient care management.
Finally, palliative care nurse leaders and their
teams must be able to measure value for
accountability and improvement to capture
both quality and cost data and sustain viable
programs.3
There are recommended pathways for pal-
liative care nurse leaders to obtain education.
Professional nursing organizations that
articulate nursing-specific leadership com-
petencies include Hospice and Palliative
Nurses Association (HPNA) and the Amer-
ican Organization for Nursing Leadership
(AONL). Organizations that provide lead-
ership skills development for all palliative
care program leaders from any discipline in-
clude the CAPC, the National Hospice and
Palliative Care Organization (NHPCO), the
American Academy of Hospice and Pallia-
tive Medicine (AAHPM), the Coalition for
Compassionate Care of California (CCCC),
and the Shiley Haynes Institute for Palliative
Care at California State University San Mar-
cos. Several universities across the United
States are locations for Palliative Care Lead-
ership Centers (PCLC) of excellence (see
Web site: https://www.capc.org/palliative-
care-leadership-centers/), whereby a core
curriculum, tools, and resources are used for
training and a 1-year mentorship is provided.
Although it may be challenging to obtain
funding for professional development, pal-
liative care nurse leaders should make the
case to their executive leadership that CAPC,
HPNA, PCLC, or other resources are neces-
sary for an effective and sustainable palliative
care program. The CAPC membership pro-
vides free continuing education credits for
the whole organization.16
CONCLUSION
The evidence is strong that home-based
and community-based palliative care both
improves the quality of life for persons with
serious illness and reduces the cost of burden
 Home-Based and Community-Based Palliative Care
to the health care system. Innovative mod-
els of community-based palliative care are
emerging rapidly, in some cases stimulated
by the ongoing COVID-19 pandemic. Nurse
leaders, by education and experience, are
optimally poised to innovate the care for
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