Article

Policy, Politics, & Nursing Practice

2016, Vol. 17(1) 32–42
Social, Economic, and Political Issues ! The Author(s) 2016
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Affecting End-of-Life Care sagepub.co.uk/journalsPermissions.nav

DOI: 10.1177/1527154416642664
ppn.sagepub.com

Janet Sopcheck, MA, RN1

Abstract
For many decades, Americans showed a preference for delaying death through a technological imperative that often created
challenges for nurses in caring for dying patients and their families. Because of their vast knowledge of health and healing, and
their proximity to patients’ bedsides, nurses are often well positioned to advocate for healthcare reform and legislation to
improve end-of-life care. This article provides an overview of the social, economic, and political factors that are shaping end-
of-life care in the United States. First, historical perspectives on end-of-life care are presented to enhance understanding of
why some clinicians and patients seem to resist change to current practices. Second, end of care issues related to advanced
technology utilization, societal expectations of care, clinical practices, financial incentives, palliative care services, and policy
reforms are discussed. Finally, future recommendations are provided to encourage nurses and other healthcare providers to
improve care for individuals facing end-of-life care decisions.

Keywords
historical events, end-of-life care, technological imperative, practice reforms, palliative and hospice services, nursing’s caring

Since the 1970s, changes in clinical practice and enact-
ment of federal legislation to improve the quality of end-
of-life care and reduce its costs continue to present
formidable challenges to clinicians, healthcare adminis-
trators, patients, families, insurers, and policymakers in
the United States (Brown, 2012; Callahan, 2012; Halpern
& Emanuel, 2015). Palliative and hospice care services
have expanded significantly since 2000. However, clinical
practices in acute care delivery settings remain relatively
unchanged in terms of utilization of intensive care thera-
pies at the end-of-life, potentially postponing timely
referrals to hospice services (Callahan, 2012; Fuchs,
2011; Halpern & Emanuel, 2015; Medicare Payment
Advisory Commission, [MedPAC], 2014). Some policy
scholars speculate that certain policy stakeholders, such
as healthcare administrators, insurers, and policymakers,
whose interests appear to be motivated by economic and
political gains, have hindered federal legislative reform to
enhance palliative care for the terminally ill (Epstein,
2007; Institute of Medicine, [IOM], 2015; Meier, 2011).
Advances in medical technologies coupled with
healthcare providers’ reticence to discuss death can
affect patients’ and families’ expectations about pro-
longing life, even in the face of patients suffering with
disease-complicating morbidities or terminal prognoses
(Callahan, 2011). Witnessing the experiences of patients
and families gives nurses insights into the complexities of
improving end-of-life care (Giovanni, 2012; Gutierrez,
2012; Martins & Basto, 2011). Furthermore, because
they are the mainstay of care in most healthcare systems,
nurses have the potential to be effective advocates for
palliative care policy changes in organizations and
government.
The purpose of this article is to provide an analysis of
the social, economic, and political factors shaping end-
of-life care in the United States. The article starts with an
overview of historical events that have influenced end-of-
life care and continues with explanation of the social,
economic, and political factors involved. It ends with a
description of care and policy implications for nurses in
advancing quality care for the dying and their families.
1
PhD student, Christine E. Lynn College of Nursing, Florida Atlantic
University, Boca Raton, Florida
Corresponding Author:
Janet Sopcheck
Email: jsopcheck@comcast.net
Sopcheck
Historical Overview
At the beginning of the 20th century, Americans
embraced death as an inevitable outcome of life.
Individuals died predominantly in the home cared for
by family, followed by a communal mourning to
acknowledge that person’s life (Callahan, 2005; Elder,
1973; Keegan & Drick, 2011). Longevity was recognized
as one’s good fortune in not having succumbed to any
acute infectious processes such as tuberculosis or pneu-
monia, which were the primary causes of death in the
early 1900s (Fontana & Keene, 2009).
Early 20th century public health enhancements in
sanitation, water quality, and housing contributed to
improved patient and population health outcomes.
Medical practice also progressed through standardized
training, new medications, and treatments (Fontana &
Keene, 2009; Keegan & Drick, 2011). With the introduc-
tion of antibiotics in the 1930s and 1940s and ongoing
medical advances to treat illnesses, expectations of living
longer healthier lives than in the past flourished. In 1900,
the average U.S. life expectancy was 50 years of age,
considerably lower than it was in 1940 (63 years of
age) and 1950 (68 years of age) (Elder, 1973; Fontana
& Keene, 2009; Keegan & Drick, 2011). Chronic debili-
tating diseases including cancer, heart disease, and stroke
became the new enemies of society (Callahan, 2005;
Curtin, 2004; Fontana & Keene, 2009).
The Hospital Survey and Construction Act of 1946,
known as the Hill-Burton Act, reframed Americans’
access to care by encompassing all people, regardless of
race. Some policymakers and historians viewed this new
approach as an important expression of social justice
(Fairman & Lynaugh, 1998; Hoge, 1948). Under the
Hill-Burton Law, Congress allocated a total of $1.125
million to states for planning the development and con-
struction of hospitals and health facilities to meet the
growing healthcare needs of individuals within commu-
nities in the post World War II era. Hill-Burton also
granted the federal government the authority to approve
individual states’ reconstruction plans; federal govern-
ment funding began in 1948 (Hoge, 1948).
With the increase in the supply of hospital beds as a
result of the Hill-Burton law, the public expected hospitals
to provide cures for illnesses, including fatal ones (Fairman
& Lynaugh, 1998). In 1948, Vane M. Hoge, then Chief of
the Division of Hospital Facilities (U.S. Public Health
Service) commented on how “increasing numbers of
people have come to see that health is more than an indi-
vidual problem-that illness and disability in any group is
both an economic liability and a direct threat to the health
of the community as a whole” (Hoge, 1948, p. 103).
Enactment of Medicare and Medicaid in 1965 infused
millions of additional federal and state dollars into
33
healthcare coverage of the nation’s older adults, dis-
abled, and poor, and mothers and children who were
dependent on welfare. With the increase in healthcare
funding from Hill-Burton, Medicare, and Medicaid
laws and patients admitted to hospitals, deaths contin-
ued to rise on hospital wards. Medicine’s curative philo-
sophy prompted the development of intensive care units
(Fairman & Lynaugh, 1998; Fuchs, 2011).
In 1969, more than 50% of U.S. not-for-profit hos-
pitals had intensive care units (Fairman & Lynaugh,
1998). Advancements in science and healthcare gave
new meaning to the finality of death and where
death would occur (Brown, 2012; Cassell, 1974). In
response to the dilemmas created by both the increased
utilization of life-extending therapies and interests in
promoting organ transplantation, brain death criteria
were first introduced at Harvard Medical School in
1968. In 1981, Congress enacted the Uniform
Determination of Death Act which provided states
with model legislative language for determining death
(Kellehear, 2008).
With advances in technology and expansion of profes-
sional healthcare in hospitals, many Americans thought
that they could be cured and or that their deaths could be
delayed. A new technological imperative emerged
(Callahan, 2005, 2012; Fuchs, 2011; Hofmann, 2002).
The technological imperative refers to the increased uti-
lization of advanced technologies by physicians to “do
everything possible” to extend the life of the individual
prolonging the inevitability of death (Callahan, 2012, p.
456; Fuchs, 2011; Hofmann, 2002, p. 675). In other
words, aggressive treatments will be implemented to do
everything possible to sustain life (Callahan, 2012;
Hofmann, 2002).
In the 1960s and 1970s, there was growing awareness
that use of advanced technologies to sustain life, para-
doxically, could make dying less humane (Kaufman,
1998). Kubler-Ross (1969) heightened America’s aware-
ness of the dying experience and the need for humanistic
care. In 1963, Dame Cicely Saunders from England intro-
duced the concept of hospice at Yale University School of
Nursing (Adams, 2009; Buck, 2007). The dean at Yale
School of Nursing at the time, Florence Wald, had inter-
ests in transforming bedside care for terminally ill
patients that paralleled Saunders’ ideals (Buck, 2007).
Their collegial relationship led to Saunders’ visiting
professorship at Yale School of Nursing in 1966 and
Wald’s volunteerism at St. Christopher’s Hospice in
London in 1968 (Adams, 2009; Buck, 2007). By 1974,
The Connecticut Hospice opened with funding from the
National Cancer Institute (NCI) (Hoffmann, 2005; Wald,
Foster, & Wald, 1980). Because of Wald’s dedicated
efforts in starting hospice care in the United States and
as a founding member of Hospice, Inc. in 1971, she has
34
been identified as the “mother of hospice nursing” (Buck,
2007, p. 122; Wald et al., 1980).
The hospice and palliative care movement continued,
supported by federal and philanthropic research funding.
With the formation of national organizations such as the
National Hospice Organization in 1978, renamed the
National Hospice and Palliative Care Organization
(NHPCO) in 2000 (Buck, 2007; Hoffmann, 2005), society
was introduced to a new world view of holistic family-
centered comfort care for the dying as an alternative to
the predominant curative medical model (Adams, 2010;
Hoffmann, 2005).
Palliative care is not the same as hospice care. It covers
a broad range of services without the requirement of a life
expectancy of 6 months or less (Jennings & Morrissey,
2011). In 1990, the World Health Organization (WHO)
defined palliative care as “the active total care of patients
whose disease is not responsive to curative treatments”
(p. 11). In a 2015 report, Dying in America, the IOM
defined palliative care “as care that provides relief from
pain and other symptoms, that supports quality of life,
and that is focused on patients with serious advanced
illnesses and their families” (IOM, 2015, p. 7).
In the 1980s and continuing into the 1990’s, grass-
roots activists, such as members of the “right to die”
movement, and philanthropic organizations, such as
Soros’ Death in America Project and the Robert Wood
Johnson Foundation, worked to heighten society’s
awareness of the need for improvements in care that
honors the rights of the dying (Brown, 2012;
Hoffmann, 2005; Kaufman, 1998; Soros, 1999). The
1990s also heralded the enactment of the 1990 Patient
Self Determination Act (PSDA) (PSDA, 1990) and the
1997 Oregon Death with Dignity Act (Kaufman, 1998).
The PSDA mandated that institutions inform patients
about advance directives and their right to make auton-
omous decisions about their health care which included
refusal of treatment (Duke, Yarbrough, & Pang, 2009;
PSDA, 1990). The Oregon law permits individuals with
medically confirmed terminal illnesses to self-administer
physician-prescribed medications to end their own lives
(Oregon Health Authority, n.d.).
In 1992, 143,000 Medicare beneficiaries were enrolled
in hospice, reaching 464,000 enrollees by 2000
(MedPAC, 2002, p.4); and by 2013, the number of enrol-
lees increased to more than 1.3 million (MEDPAC, 2015,
p. 289). In 1992, 1,208 hospices participated in Medicare,
increasing to 2,283 in 2002 (MedPAC, 2002, p.5) and
3,925 in 2013 (MedPAC, 2015, p. 294).
Social Factors Affecting End-of-Life Care
Social factors that affect end-of-life care include perspec-
tives on death and dying, changing demographics, and
Policy, Politics, & Nursing Practice 17(1)
utilization of advanced technologies in caring for indivi-
duals at the end-of-life. In the sections that follow,
“society” refers to the general American public.
The U.S. as a Death-Denying Society
Death is a “social relationship,” in which culture, values,
emotions, and personal relationships dynamically alter
the physiological process of dying and death’s meaning
(Kellehear, 2008, p. 1534). Although death is inevitable,
it is an elusive topic grounded in a fundamental fear of
what is unknown (Fontana & Keene, 2009). Many indi-
viduals avoid conversations about death. Not knowing
the exact circumstances of one’s death, makes planning
or thinking about it difficult (Brown, 2012; Keegan &
Drick, 2011; Kellehear, 2008).
Societal perspectives, personal social relationships,
and cultural norms of healthcare institutions focused
on curing all influence the time, place, and situation of
death (Callahan, 2012). Older individuals (e.g., those 65
years of age and older) often find it easier to discuss and
confront death than younger adults (Fontana & Keene,
2009; Sessanna, 2010). Older adults probably have
experienced death of significant others, which might
prompt conversations about death and dying
(Gruenewald & White, 2006).
The majority of individuals do not think about death
until confronted by a grave illness or an end-of-life situa-
tion (IOM, 2015; Pew Research Center, 2013) and then
they hope that medical advances will save them from or
delay death (Callahan, 2012; Fontana & Keene, 2009).
Ironically, society is also intrigued by death and the mys-
tery that surrounds it (Fontana & Keene, 2009); subse-
quently, society is enraptured with dramas that save
people from catastrophic illnesses (Kellehear, 2008).
Although Americans may want to deny death, the
print and broadcast media have attempted to enhance
society’s awareness of the expenditures associated with
dying (Kovner & Lusk, 2012) while also focusing on
youth and advancing treatments for chronic conditions
(Callahan, 2012; Jennings & Morrissey, 2011).
Demographics and Diversity
Predictions about shifts in the U.S. population have con-
tributed to a sense of urgency to reform end-of-life care.
As baby boomers (those born between 1946 and 1964)
age, the number of Medicare eligible older adults with
chronic life-ending conditions will continue to rise
(American Hospital Association [AHA], 2011; Ortman,
Velkoff, & Hogan, 2014). By 2030, the number of indi-
viduals age 65 and over is predicted to reach almost
73 million, increasing to nearly 84 million in 2050.
Individuals 85 years of age and over are expected to
Sopcheck
reach nearly 9 million by 2030 and 18 million by 2050
(Ortman et al., 2014). The older adult population in 2013
neared 45 million with approximately 6 million indivi-
duals 85 years and older (Department of Health &
Human Services [DHHS], 2014).
By 2030, the number of individuals 65 years of age
and older who identify as Black Americans, Hispanics,
Asians, and American Indians or Alaskan natives is pre-
dicted to be 21 million (almost 29% of the older adult
population) (DHHS, 2014). This upward trend will likely
continue so that by 2050, the number of individuals from
these same groups is estimated to be approximately 33
million (39% of the 65 and over population) (Ortman
et al., 2014). This will require expanding healthcare pro-
viders’ education related to cultural traditions and per-
spectives about end-of-life for diverse populations. To
meet the end-of-life care needs of ethnically diverse and
underserved populations, healthcare providers, educa-
tors, and policymakers will need to enhance availability
of palliative care services and increase the number of
qualified healthcare providers within interdisciplinary
teams (IOM, 2015). Expanding palliative care services
would benefit individuals from underserved populations
such as immigrants who often seek medical treatments
late in disease progression because of their lack of health
literacy or the unavailability of healthcare services
(Nedjat-Haiem & Carrion, 2015).
Debates Over Futility
Determining what constitutes futile care is difficult
because clinicians, scholars, and policymakers subjec-
tively interpret its meaning (Callahan, 2012; Epstein,
2007; Mohammed & Peter, 2009). One perspective is
that medical futility consists of therapeutic interventions
that fail to produce beneficial patient outcomes
(Coustasse, Quiroz, & Luire, 2008). Another interpreta-
tion of medical futility is that it refers to “any effort to
achieve a result that is possible but that reasoning or
experiences suggests is highly improbable and that
cannot be systematically produced” (Schneiderman,
Jecker, & Jonsen, 1990, p. 951). On the other hand,
extending medical interventions in a holistic manner
might not be futile if it assists in resolving uncertainty,
promotes well being, or extends a patient’s life so that
family members reach some type of closure related to a
loved one’s passing (Coustasse et al., 2008;
Schneiderman et al., 1990).
Without a consensual or legal definition of futility,
medical, political, and ethical disputes over end-of-life
will continue (Callahan, 2012; Coustasse et al., 2008;
McCabe & Storm, 2008). With the predicted shifts in
cultural demographics in the U.S. population addressing
preferences for end-of-life care in honest conversations
with patients and families is paramount to quell
35
mistrusts about discontinuing care that healthcare clin-
icians may consider futile and create more peaceful death
experiences. Providing information on the benefits of
palliative care may prompt patients’ and families’ deci-
sions about transitioning to hospice (IOM, 2015).
Besides cultural variations related to end-of-life care
preferences, patients and their families may delay or
forego life-sustaining treatment decisions because of
lack of knowledge about terminal disease trajectories,
hopes for a miracle cure instigated by media reporting
of the latest research and pharmaceuticals for various
diseases, as well as a family members’ lack of knowledge
about loved ones’ end-of-life preferences (Callahan, 2102;
IOM, 2015; Jennings & Morrissey, 2011; Pizzo, 2015).
Healthcare clinicians may also be reluctant to advise
patients and families that continuing aggressive therapies
is futile because they do not want to relinquish their
hopes of a possibility for survival (Callahan, 2012;
Pizzo, 2015). Family members may also have doubts
because the aggressive therapies seemingly are maintain-
ing their loved one’s stability (Callahan, 2011; Crippen,
2005; Perry & Stone, 2011). Additionally, clinicians may
discover that the therapies provided are not the ones that
patients or their families prefer (Giovanni, 2012;
Gutierrez, 2012; Jennings & Morrissey, 2011).
Generally, minority populations opt for more inten-
sive therapies at the end-of-life than other groups. Many
individuals from minority groups have not completed
advance directives about end-of-life preferences particu-
larly among Black, Hispanic, and Asian patients (IOM,
2015, p. 151). Honest, open, and culturally sensitive com-
munication by healthcare clinicians needs to be pro-
moted with patients and families to enhance their
understanding of disease trajectory and impending
death, even in the most difficult situations.
Economic Factors
Economic factors pertaining to end-of-life care include
healthcare expenditures in the last year of life. They also
include utilization of palliative care and hospice services
for individuals who are terminally ill in healthcare set-
tings such as hospitals and long-term facilities.
Health-Care Expenditures
An understanding of U.S. healthcare spending is useful
for appreciating how palliative care costs compares with
other expenditures. Data on healthcare spending also
can identify gaps in evidence and how end-of-life care
spending might vary by payer (insurer), demographic
group, or other factors.
In 2014, healthcare expenditures accounted for 17.5%
of the U.S. federal budget (Centers for Medicare &
Medicaid Services[CMS], 2015b). Although the
36
utilization of hospital services for Medicare recipients in
their last 6 months of life decreased by about 10%
between 2007 and 2010, the average number of days
spent in intensive care unit (ICU) remained unchanged
at 3.9 (Goodman et al., 2013). Hospital care expenditures
rose from $692 billion in 2007 to $817.6 billion in 2010,
reached $971.8 billion by 2014 (CMS, 2015b); and are
projected to increase to $1,755.1 billion in 2024 (Keehan
et al., 2015). Hospital care consumes approximately one
third of national healthcare spending (AHA, 2011; CMS,
2015b). Spending on health resources such as pharma-
ceuticals and advanced technologies continue to increase
consistent with the growth of hospital care expenditures
(AHA, 2011; Fuchs, 2011). Use of technology accounts
for a major part of national health expenditures, subse-
quently increasing health insurance costs (AHA, 2011).
Overutilization of ICU services coupled with increased
hospital admissions and extended ICU stays for older
adults in the last few months of life continues to escalate
healthcare costs without necessarily improving the quality
of care or patient outcomes (Niederman & Berger, 2010;
Teno et al., 2013). Overtreatment or extending aggressive
life-sustaining therapies in patients who are not likely to
survive account for a portion of the “wasteful” annual
healthcare expenditures, which in 2011 was “estimated at
between $158 billion and $226 billion (Berwick &
Hackbarth, 2012, p. 1514) Intensive and life-sustaining
therapies can result in expenditures of more than three
quarters of the total final year of life healthcare costs in
the last month of life (Zhang et al., 2009).
In 2014, Medicare expenditures ($618.7 billion)
accounted for 20% of national healthcare spending
(CMS, 2015b), with about 27% expended for benefici-
aries in the last year of life (Hogan, 2015; CMS, 2015b).
In 2012, average annual payments for Medicare Parts A/
B were approximately 85% higher for decedents
($46,793) than survivors ($7,181) (Hogan, 2015). The
majority of all U.S. healthcare expenditures are for the
last 6 to 12 months of life (Giovanni, 2012; Jenq &
Tinetti, 2013). Medicare is the major payer for those
expenditures. Approximately 73 % of deaths (in 2013)
were among individuals 65 years and older (Centers for
Disease Control and Prevention, CDC, 2015).
Geographic variations exist related to length and
intensity of treatments and healthcare expenditures for
Medicare beneficiaries. Newhouse and Garber (2013)
report disparities between low and high cost regions
that are due to diagnostic billing, physicians’ preferences
related to aggressiveness in treating, and the utilization
of post-acute services, which include hospices, long-term
facilities, and home health care. Although age and dis-
ease-specific variations exist among patients, increased
spending for medical care overall does not decrease mor-
tality rates (Rothberg, Cohen, Lindenauer, Maselli, &
Auerbach, 2010).
Policy, Politics, & Nursing Practice 17(1)
Utilization of Hospice and Palliative
Care Services
Hospice care has become a commercialized multibillio-
naire dollar industry with Medicare reimbursements
accounting for about 90% of hospice providers’ revenue
(Brown, 2012; NHPCO, 2013; Perry & Stone, 2011).
Medicare spending for hospice increased from $2.9 bil-
lion in 2000 to $15.1 billion in 2013 (MedPAC, 2015, p.
289). In 2000, 22.9 % of Medicare decedents were enrolled
in hospice (MedPAC, 2014, p. 300) compared with 47.3%
in 2013 (MedPAC, 2015, p. 293). The number of hospice
and palliative care services continues to rise, primarily in
the for-profit market. Between 2012 and 2013, hospice
providers increased by 5.3% (MedPAC, 2015, p. 294). In
2013, Medicare beneficiaries received hospice care from
3,925 providers, 61% of which were for-profit hospices,
33% nonprofit, and 5% were under government auspices
(MedPAC, 2015, p. 294).
Hospitals get paid at higher rates for intensive care
services than hospice or palliative care. This could result
in clinicians delaying referrals to hospice because third
party payments to acute care organizations for aggres-
sive therapies tend to be more lucrative than palliative or
other end-of-life care (Brown, 2012; Fuchs, 2011; Smith
& Cassel, 2009).
Nationwide, approximately 1.6 million individuals
received hospice services from 5,500 hospice providers in
2012 (NHPCO, 2013, p. 4, 8); which included about 1.2
million Medicare beneficiaries receiving care from over
3,700 hospices (MedPAC, 2014, p. 299). Although hospice
and palliative care services have expanded tremendously,
they continue to be utilized predominantly by individuals
in their last weeks of life. Attributing factors for late access
are society’s focus on curative therapies confounded by
prognostic uncertainties surrounding many diseases
(MedPac, 2014; NHPCO, 2013). Out of the estimated
2.5 million Americans who die annually, approximately
45% are receiving hospice services at the time of death
(Keegan & Drick, 2011; NHPCO, 2013). According to
the NHPCO (2013), in 2011 and 2012, nearly 36% of hos-
pice patients had lengths of stays of less than a week.
The majority of hospice patients are older adults; 16%
of patients admitted to hospice in 2012 were under 65
years of age. Approximately 40% were 85 years or older.
One third of hospice deaths occurred within an inpatient
hospice facility or a hospital and about one fourth
occurred in a nursing home or residential facility
(NHPCO, 2013, p. 6). Approximately 63% of hospice
patients have non-cancer related illnesses such as heart
and lung disease and dementia (NHPCO, 2013, p. 7).
Racial and ethnic disparities in hospice utilization exist
with African Americans admitted ten times less than
Caucasians (NHPCO, 2013, p. 7). Of the total number
of hospice patients in 2012, about 7% were of Hispanic
Sopcheck
or Latino ethnicity and 2.8% were Asian or other Pacific
Islander (NHPCO, 2013, p. 7).
Approximately two thirds of hospitals nationwide
have a palliative care team (Center to Advance
Palliative Care, [CAPC], 2012). These inpatient teams
can bridge the gap between intensive therapies and hos-
pice care (Teno & Connor, 2009). In-hospital palliative
care programs have been shown to alleviate patient and
family suffering, enhance patient and family satisfaction,
reduce intensive care lengths of stay, lower overall hos-
pital costs, and in some cases, prolong life with better
disease management which alleviates the suffering and
potential complications from acute medical interventions
(Jennings & Morrissey, 2011; Meier, 2011; Teno &
Connor, 2009; Wholihan & Pace, 2012).
Despite these advantages, reimbursement systems for
palliative care services lack structures and mechanisms to
encourage hospitals to use inpatient palliative care pro-
grams (Brown, 2012, p. 475; Meier, 2011). Moreover, the
public has yet to demand that palliative care services
become standard practice within healthcare systems
(Giovanni, 2012; Jennings & Morrissey, 2011).
Americans may be lead to believe that “more care”
results in better health outcomes (Brown, 2012, p. 478).
Although, palliative care advocates are trying to change
the public’s view about the benefits of palliative and
hospice services for patients who are nearing the end-
of-life as well as the cost effectiveness of these services
compared to intensive medical treatments (Jennings &
Morrissey, 2011; Meier, 2011). Arguments reframed
through a humanistic and pragmatic lens emphasizing
that care is not being limited or curtailed, but rather
redirected to palliative measures to enhance quality
care at the end-of-life, may encourage transitions to ser-
vices (Callahan, 2012; Meier, 2011).
In 2014, the IOM released its report on Dying in
America, which includes 12 core components of end-of-
life care and five recommendations for its improvement.
These recommendations emphasize patient-centered,
family-oriented comprehensive care, timely palliative
care referrals, advance care planning conversations
among family members, programs to provide knowledge
and training for health-care professionals, and policy
reforms for financing end-of-life care (IOM, 2015).
Among the recommendations for financing are social
support services for patients and caregivers, integration
of palliative care programs, and advance care planning
(IOM, 2015).
Political Factors
Federal Legislation and Funding
The Affordable Care Act (ACA) lacked funding for hos-
pice or palliative care services. It also lacked any changes
37
to the 1983 Medicare Hospice Act’s regulation to require
patients to forego curative care as a criterion for hospice
admission. The only exception was children with term-
inal conditions, who under the ACA now have the
option of receiving both curative and palliative therapies,
reimbursable by state Medicaid and Children’s Health
Insurance Programs (Brown, 2012; Giovanni, 2012).
The 1982 Tax Equity and Fiscal Responsibility Act
(TEFRA), Section 122 had provisions that enabled
Medicare to finance hospice services for beneficiaries in
their last 6 months of life, beginning in November 1983
(Department of Health and Human Services, HHS,
1983; Miller & Mike, 1995). This Medicare Hospice
Benefit allocated payments prospectively on a per diem
rate reimbursed under Medicare Part A depending on
the level of service provided to the beneficiary from
Medicare approved hospices. The four levels of service
established under the law-routine home care, continuous
home care, inpatient respite care, and general inpatient
care-structure daily reimbursement rates to present day
(MedPAC, 2015; Miller & Mike, 1995). The 2015
Medicare per diem base payment rates for routine
home care, inpatient respite care, and general inpatient
care were $159.34, $164.81, and $708.77, respectively.
Continuous care for Medicare beneficiaries is reimbursed
at a base hourly rate of $38.75 (MedPAC, 2015, p. 290).
Under the Medicare hospice benefit, beneficiaries usually
have to forego curative therapies.
The ACA (Section 3021) created a Center for
Medicare and Medicaid Innovation within the Centers
for Medicare & Medicaid Services to “test innovative
payment and service delivery models” (ACA, 2010, p.
306). Subsequently, CMS (2015a) has initiated a
Medicare Hospice Concurrent Care demonstration pro-
ject, Medicare Care Choices Model, to evaluate the
effects of concurrent “curative treatment and hospice
care” and its impact on patient outcomes and reimburse-
ments (ACA, 2010; Brown, 2012; Giovanni, 2012). This
project has been expanded to 5 years, with two phases
beginning in January 2016 and January 2018, ending in
December of 2020; 141 hospices participate with a poten-
tial enrollment of 150,000 Medicare recipients who meet
specific diagnostic criteria (CMS, 2015a).
Importance of the Patient Self Determination Act
Although states vary in implementation of the PSDA of
1990, the original intentions of the law was to give
patients the right to determine health treatment options
and opportunities to complete advance directives. The
PSDA defines an advance directive as a “written instruc-
tion, such as a living will or durable power of attorney
for healthcare, recognized under state law (whether stat-
utory or as recognized by the courts of the State) and
relating to the provision of such care when the individual
38
becomes incapacitated” (PSDA, 1990). The PSDA also
was intended to promote cost containment at the end-of-
life by decreasing extensive therapies that clinicians often
prescribed as “defensive medicine” (Duke et al., 2009, p.
114; Fuchs, 2011; Giovanni, 2012).
Since enactment of the PSDA, healthcare expendi-
tures for intensive care continue to increase and only
25% to 30% of Americans have advance directives
(Callahan, 2012; Duke et al., 2009; Hickman, Hammes,
Moss, & Tolle, 2005; IOM, 2015). A 2013 survey con-
ducted by The Conversation Project reported less than
30% of Americans have had end-of-life conversations
with family members as cited in the IOM report, Dying
in America (IOM, 2015, p. 125). The PSDA (1990) man-
dated that an adult patient receive written instructions
about one’s right to make healthcare decisions, refuse
care, and initiate advance directives. The law also
stated that providers such as hospitals, nursing facilities,
home care services, and hospices must provide this infor-
mation to patients (PSDA, 1990).
Nonetheless, advance directives that patients receive
in hospital settings might not provide explicit informa-
tion about a patient’s end-of-life treatment preferences.
They may be reneged by families and may hinder pro-
ductive communication between family members and
healthcare providers about goals of care and prognosis
(Giovanni, 2012; Hickman et al., 2005). Family surro-
gate decision makers may have uncertainties about a
loved one’s end-of-life preferences in certain care situa-
tions, act in accordance with their own preferences, or
experience emotional conflicts over letting go of a person
whom they care deeply about (Cronin, Arnstein, &
Flanagan, 2015; Wallace, 2015).
The Five Wishes is an advance directive that the
Aging with Dignity Organization developed in 1998 to
encourage individuals to state their end-of-life prefer-
ences in their own words and share them with family
members. As of 2010, this document is legally recognized
in 42 states and available in 28 languages, which enable
individuals from diverse cultural backgrounds to provide
a more detailed description of their end-of-life care
desires (Aging with Dignity, 2015; Sabatino, 2010). An
alternative and an adjunct to a patient’s advanced direc-
tive is the Physician Orders for Life-Sustaining
Treatment (POLST), which some states refer to as
Medical Orders for Life Sustaining Treatment
(MOLST). This document can guide terminally ill
patients in articulating end-of-life care treatment choices
with physicians in the last year of life. POLST or
MOLST documents specify medical orders based on an
individual’s preferences for end-of-life care interventions
and can include aggressive to comfort care measures
determined by the patient or in some cases their surro-
gates (Meier, 2011; Sabatino, 2010). This document also
has transferability within different patient care settings
Policy, Politics, & Nursing Practice 17(1)
(Brown, 2012; Sabatino, 2010). The Five Wishes and
other advanced directives are completed at any time
during an individual’s life span and are not medical
orders.
Patients’ Rights and End-of-Life Choices
Some proposed state legislative reforms directed at
allowing withdrawals from life-sustaining therapies or
physician-assisted suicide (PAS) in “futile cases” have
evoked controversies and have been stalemated. The
Texas Futile Law of 1999 gives healthcare systems the
ability to withdrawn life-sustaining therapies in “futile”
situations even if the family members disagree with the
healthcare facility’s decision (Duke at al., 2009). Texas is
the only state that has a law where physicians, not family
members, can determine an individual’s life ending.
Legal documentation and surrogate’s agreement with
physicians’ decisions is required in other states
(Neuberg, 2009).
Physician-assisted suicide is another controversial
issue. According to the Pew Research Center’s Survey
on end-of-life preferences (2013), Americans are equally
divided on the issue. Washington and Vermont are the
only two states that have enacted Physician-assisted
Suicide laws since Oregon did so in 1997. In 2008,
Montana’s Supreme Court authorized Physician-assisted
suicide, but the state legislature has not passed any bills
on the issue (Brown, 2012; Masci, 2013).
Implications for Nursing
Demand for long-term and quality end-of-life care will
likely rise as life expectancy increases, management of
chronic diseases improves, and the public acquires grow-
ing awareness of the importance of compassionate care
and choice at the end-of-life. Family members frequently
experience emotional turmoil and decisional conflicts
over end-of-life treatment options for their loved ones
(Gutierrez, 2012). Nurses can offer explanations about
the potential benefits of palliative care services
(McHugh, Arnold, & Buschman, 2012). They also can
be the leaders in organizational and government reforms
to enhance the quality of end-of-life care and respect
patients’ choices.
The essence of nursing’s compassionate patient and
family centered caring is aligned with many the goals
of palliative care (McHugh et al., 2012) such as alleviat-
ing pain and other disease-related symptoms, providing
care aligned with patient-family needs and supporting
patients and their families through difficult end-of-life
decisions (Meier, 2011). Nurses often have insights into
their patients’ lives inclusive of the social relationships,
cultural beliefs and values that identify what a “good
death” means to each individual. By listening to
Sopcheck
nurses’ stories on end-of-life caring (Hassmiller, 2013),
healthcare administrators and researchers begin to
understand their significant role in increasing consumer
satisfaction through person-centered, family-oriented
caring (IOM, 2015; McHugh et al., 2012).
The overall population mix will be more culturally
diverse in the next 35 years (Ortman et al., 2014)
adding complexity to nurses’ and other health providers’
roles in caring for the dying. Hospitals responding to this
demand could partner with academia to offer courses on
cultural humility within end-of-life caring or incorporate
The End-of-Life Nursing Education Consortium
(ELNEC) course which includes components on cultural
diversity and age-specific competencies (Giovanni, 2012).
Programs such as EPEC for physicians and the APPEAL
which is focused on end-of-life care for African Americans
can assist healthcare providers in enhancing conversations
with patients and families to gain understanding and con-
sensus on goals of care (Callahan, 2005).
Some nurses are voicing their concerns and becoming
involved in organizational discussions over end-of-life
care as they witness patients and families struggling
with these issues (Martins & Basto, 2011; Mohammed
& Peter, 2009). Families trust and rely on nurses.
Families want details and clarification of their loved
ones’ prognoses in compassionate communications that
would assist them in making care decisions (Gutierrez,
2012). Moving to reform end-of-life care requires equal
partnerships between medicine and nursing in discussing
goals of care with patients and families. Broad interdis-
ciplinary collaboration that encompasses other profes-
sions is equally as important.
Researchers need to continue to demonstrate nur-
sing’s value in promoting early transitions to palliative
care. Other topics that warrant investigation are the
organizational and policy factors that impede or encou-
rage palliative care availability and accessibility, espe-
cially for diverse populations that have various
cultural, religious, social, and other values. Cost analyses
are also needed regarding innovative community-based
interventions that could be part of palliative care. As
activists, nurses need to be aware of reform issues that
are unreachable or too controversial and advocate for
change focused on the caring aspect of their work and
the patients they care for. Presenting anecdotes about
caring for the dying and their families may move legis-
lators to caucus for reforms. Initiating conversations
with local or state policymakers may promote reforms
to increase funding for palliative care programs in hos-
pitals, especially for patients of diverse backgrounds
(Giovanni, 2012; Hassmiller, 2013). Along with this,
nurses need to expand their knowledge of the ACA’s
required value-based purchasing program for Medicare
reimbursements and pending state and federal legislative
initiatives on palliative care.
39
Conclusion
End-of-life encompasses an array of multidimensional
factors influenced by an intricate web of social relation-
ships within healthcare and government organizations.
Although end-of-life care has improved through the
expansion of palliative care services, additional reforms
that encourage timely transitions to hospice care, end-of-
life care coordination and the importance of advance
care planning are needed. This is especially true as the
country becomes increasingly diverse. Callahan (2012)
may be right in claiming that “poor end-of-life care is
symptomatic of the larger failings of the American health
care system” (p. 462); and that “war against death is
unwinnable and surrender to its inevitability is the
course of wisdom” (p. 465).
Kubler-Ross (1969) encouraged others to listen and
learn from the dying. Florence Wald’s legacy of promot-
ing compassionate care at the end-of-life lives on as hos-
pice services continue to increase nationwide with nurses
and other healthcare providers continuing their efforts to
heighten public awareness of the benefits of palliative
care for patients terminally ill and their families.
Acknowledgments
The author thanks Dr. Susan Dyess, Dr. Patricia Liehr, and
Dr. Marlaine Smith for their support, guidance, and encour-
agement in writing this manuscript.
Declaration of Conflicting Interests
The author declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The author received no financial support for the research,
authorship, and/or publication of this article.
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Author Biography
Janet Sopcheck received a Master of Arts degree in nur-
sing from New York University. She is presently a PhD
student (dissertation phase) in the Christine E. Lynn
College of Nursing at Florida Atlantic University in
Boca Raton, Florida and also is employed as an assistant
professor in a BSN program at a college in Southeast
Florida.