ArticlePDF Available

Social Justice and Advanced Cancer Patients: an Analysis of Key Policies

Authors:

Abstract

PurposeThis policy analysis examines key aspects of two policies fundamental to work with terminal cancer patients: the Medicare Hospice Benefit and Medicare policy in palliative care. End-of-life care, affected by these policies, should address physical, emotional, and spiritual suffering for all vulnerable groups.Methods Using Gilbert and Terrell’s framework, social allocations, social provisions, service delivery, and financing are examined to better understand each policy’s effects on equality, equity, and adequacy for terminally ill cancer patients.ResultsIn practice, each has substantially socially unjust effects for cancer patients. Disproportionate advantages result for those who are white, have family caregiving support systems, those with higher socioeconomic status, and individuals with stable insurance coverage.Conclusion The Medicare Hospice Benefit and Medicare coverage for palliative care need to be better understood by policy practitioners and all practitioners in health care settings. Advocacy can contribute to improved equity in end-of-life cancer care.
ORIGINAL PAPER
Social Justice and Advanced Cancer Patients:
an Analysis of Key Policies
Suzanne Marmo
1
&Shannon R. Lane
2
#Springer Nature Switzerland AG 2020
Abstract
Purpose This policy analysis examines key aspects of two policies fundamental to
work with terminal cancer patients: the Medicare Hospice Benefit and Medicare policy
in palliative care. End-of-life care, affected by these policies, should address physical,
emotional, and spiritual suffering for all vulnerable groups.
Methods Using Gilbert and Terrells framework, social allocations, social provisions,
service delivery, and financing are examined to better understand each policys effects
on equality, equity, and adequacy for terminally ill cancer patients.
Results In practice, each has substantially socially unjust effects for cancer patients.
Disproportionate advantages result for those who are white, have family caregiving
support systems, those with higher socioeconomic status, and individuals with stable
insurance coverage.
Conclusion The Medicare Hospice Benefit and Medicare coverage for palliative care
need to be better understood by policy practitioners and all practitioners in health care
settings. Advocacy can contribute to improved equity in end-of-life cancer care.
Keywords Oncology.Social justice .End-of-life care .Palliative care .Medicare .Health
policy
Journal of Policy Practice and Research
https://doi.org/10.1007/s42972-020-00003-0
Dedicated to Paul Kapralos.
*Suzanne Marmo
marmoromans@sacredheart.edu
Shannon R. Lane
shannon.lane@yu.edu
1
School of Social Work, Sacred Heart University, 3135 Easton Turnpike, Fairfield, CT 06825, USA
2
Wurzweiler School of Social Work, Yeshiva University, New York, NY, USA
Introduction
According to the Centers for Disease Control and Prevention, cancer is the second
leading cause of death in the United States with over 598,000 deaths in the year 2016
(Xu et al. 2018). The Medicare Hospice Benefit and Medicare coverage for palliative
care are two key policies for cancer patients. Both hospice and palliative care are
considered to be compassionate care programs with missions dedicated to holistic care
for persons with life-threatening illnesses. Studies show that palliative care utilization
and enrollment in hospice programs prevent pain and suffering for cancer patients,
improve satisfaction with care, and are cost-effective options for palliation of symptoms
associated with advanced cancer care (Bakitas et al. 2009; Meier 2011; Rahman 2017).
Since the emergence of oncology in the 1930s as a medical specialty, end-of-life care
for advanced cancer patients has increased in complexity due to increased life expec-
tancy, longer medical fragility, and recognition of the need to address physical,
emotional, and spiritual suffering (Clark 2017). Despite reductions in cancer mortality
among all cancer patients, earlier death, less use of preventive care, lower health care
literacy, and more difficulties managing symptoms are pervasive for non-White cancer
patients, those in rural areas, and those experiencing poverty (National Cancer Institute
2019; Rine 2018). The United States has a long history of intentionally, and uninten-
tionally, segregating quality cancer care to exclude people who are experiencing
poverty, lack insurance, and are from ethnic minority backgrounds (Alcaraz et al.
2019). It has been suggested that this segregation in cancer care laid the foundation
for the development of a health care system with systemic socioeconomic and racial
inequality in palliative cancer care (Alcaraz et al. 2019; Hughes and Vernon 2019). This
paper is designed to highlight the functional points within existing policy that has the
potential to create these inequalities and to lay the foundation for future policy
advocacy to address these injustices created by existing policy and policy gaps.
Social Justice and Palliative Care
Social justice has different conceptualizations for different constituencies within the
social work profession (Reisch 2019). Rawls (1971) is considered to be one of the most
important theorists of social justice theory. His concepts include both individual justice,
where each individual is entitled to equal rights and should have equal access, and
distributive justice, where resources are distributed equitably (Rawls 1971). This
distinction between equality and equity is particularly relevant to advanced cancer
patients. Other social justice theorists have incorporated additional elements or per-
spectives on social justice which incorporate the need for a greater societal movement
to address the social inequalities of underserved and minority populations (Reisch
2019; Vanidestine and Aparicio 2019). Vanidestine and Aparicio (2019) suggest that
a social justice perspective must not only address social inequity in health care systems
but also how the normalization of whitenessacts as a foundational concept in our
countrys racial hierarchy of outcomes(p. 11).
The National Coalition for Hospice and Palliative Care (NCHPC) National Consen-
sus Project (2018) describes core structures necessary for providing excellence in
palliative care and hospice in the United States . Within the domains of practice
guidelines, palliative care and hospice providers are advised to address how social
Journal of Policy Practice and Research
justice principles and costs of care are considered in the allocation of resources across
all populations to improve health outcomes of seriously ill people and address
healthcare disparities(NCHPC 2018, p. 53). How providers are to apply social justice
principles to their practice is not prescriptive in these recommendations, but this
conceptualization of social justice seems aligned with the National Association of
Social Workers (NASW) Standards for Palliative & End-of-Life Care (2004). NASW
describes a need for a social justice commitment in professional social work palliative
care practice to engage in social and political actionto ensure equal distribution of
resources for palliative care patients, with particular focus on eliminating health care
disparities (2004). In the United States , disparities in access and effectiveness in health
care represent a significant social justice issue and closing the health gap has been
designated as one of the Grand Challenges for Social Work (Fong et al. 2017). The
purpose of this analysis is to examine if there are preventable gaps in the ways current
hospice and palliative care policy address the distribution of end-of-life care resources
for cancer patients.
Hospice and palliative care in the United States differ in important ways, and these
differences are especially apparent among cancer patients due to curative and
noncurative treatment protocols in later stages of the disease process. Palliative care
is not restricted to terminal patients only and can be offered concurrently with curative
treatment to those who require symptom management. Hospice is very similar in
philosophy and is a type of palliative care for those with a prognosis of 6 months or
less who are no longer seeking curative treatment. For cancer patients, accepting
hospice care requires a choice to stop treatment options such as chemotherapy or
radiation, often when they are being used for palliation (Obermeyer et al. 2014). This
requirement has been suggested to contribute to declining lengths of stay on hospice
programs for cancer patients when compared with patients with other illnesses (Marmo,
2014; NHPCO 2018; Obermeyer et al. 2014).
Significance
When examining cancer care in the United States through a social justice lens, social
determinants of health experienced by marginalized populations contribute to differ-
ences in cancer care and outcomes across the disease process (Alcaraz et al. 2019;
Hughes and Vernon 2019; Jackson and Gracia 2014). These racial differences are
expressed within a number of different groups and populations. African-American
cancer patients have 25% higher mortality rates than White cancer patients. African-
American women are 40% more likely to die of breast cancer and African-American
men are 2.4 times more likely to die of prostate cancer than Whites with the same
illnesses (Siegel et al. 2011). Vanidestine and Aparicio (2019) describe how differences
in racial health outcomes do not just differ but are disparities in racial health outcomes
when social determinants are considered avoidable and unjust. Disparities evident in
social determinants of cancer include poor and non-White cancer patients being less
likely to engage in preventive medicine and more likely to be impacted by environ-
mental causes of cancer (Hughes and Vernon 2019). Racial and ethnic minorities and
populations in poverty have been shown to be more likely to experience delays in
cancer treatment due to distrust of the medical establishment, history of racial trauma,
Journal of Policy Practice and Research
implicit bias of health care providers, and inability to pay for treatment costs (Alcaraz
et al. 2019; Rine 2018). Racial and ethnic minorities and individuals who are poor are
also more likely to be diagnosed in advanced stages of cancer, have less access to care
options in all phases of the disease process, and experience inequity in meeting death
preferences (Hughes and Vernon 2019; Hiatt and Breen 2008).
When social conditions lead to disparities in mortality outcomes, these conditions
can be described as social determinants of death (Silva et al. 2014). Hospice utilization
in the U.S. shows differences by race and ethnicity, with overall census numbers
reflecting 82.5% Caucasian, 8.2% African-American, and 6.4% Hispanic patients
enrolled in hospice (NHPCO 2018) compared with the overall U.S. population per-
centages of 60% Caucasian, 12% African-American, and 18% Hispanic (The Kaiser
Family Foundation 2018). For terminal cancer patients, disparities in social determi-
nants of death reveal that racial and ethnic minorities experience less utilization of
hospice and palliative care, a higher likelihood of difficulties in managing symptoms
and experiencing pain, a higher likelihood of hospitalization in final stages of life, and a
higher likelihood of discharge from hospice (Hughes and Vernon 2019; Jackson and
Gracia 2014; Rine 2018). Utilizing a social justice-informed policy analysis, we
question systemic power and privilege that is created and maintained by social policies
in end-of-life care and result in disadvantage for vulnerable cancer patients.
Medicare and End-of-Life Care
US public policy contributes to the experiences of advanced cancer care patients when
traditional modalities of treatment may be less effective or symptoms of pain and
suffering from cancer disease process and treatment side effects require inclusion in
goals of care. The policy affects not only the services available and funding to pay for
those services but even the terms used to describe them. For example, a clear distinction
has been made in the United States between hospice and palliative care as a construct of
US public policy related to relevant requirements in the Medicare Hospice Benefit. This
distinction does not exist in other countries where the terms are often used synony-
mously and if they do differ, it is usually used to refer to a physical space or location of
care (Radbruch and Payne 2009). In Australia and Western Europe, unlike in the United
States, coordinated hospice care is available from the time of diagnosis of a life-
threatening illness with no restriction on the length of prognosis or requirement to
suspend curative treatment (Harrison and Connor 2016). Cancer patients in the United
States in particular are impacted by the hospice limitation on curative treatment as this
type of treatment is much more obvious and specific than other illnesses. In addition,
high-cost chemotherapy and radiation are often used for palliation, which also limits
access to hospice care due to the financial structure of the hospice benefit (Institute of
Medicine 2001).
The Medicare Hospice Benefit and Medicare coverage for palliative care were
chosen for analysis for several reasons. First, Medicare policies which define and
establish coverage for hospice and palliative care have significant effects on all aspects
of health care for this population. Not only is Medicare the primary payor for these
services, private insurance plans and state Medicaid funds tend to use Medicare
guidelines for benefit consideration, meaning that policy decisions made within the
Medicare system will likely set the standard of care for non-Medicare patients. Second,
Journal of Policy Practice and Research
50% of all Medicare deaths in the U.S. occur while enrolled in hospice programs, yet
disparities in hospice and palliative care utilization by Black, Latinx, and lower income
populations suggest unequal service provision in end-of-life care (Hughes and Vernon
2019; Rizzuto and Aldridge 2018; Ventura et al. 2014).
Medicare and Palliative Care Benefits
The World Health Organization defines palliative care as an approach that improves
the quality of life of patients and their families facing the problems associated with life-
threatening illness, through the prevention and relief of suffering by means of early
identification and impeccable assessment and treatment of pain and other problems,
physical, psychosocial and spiritual(n.d., para 1). The creation and recognition of
palliative care as a defined medical specialty in the United States emerged in 2006
(Kelley and Meier 2015). The success of the hospice movement in controlling costs and
heightening awareness of the need to improve end-of-life care contributed to the need
for professional specialization and therefore the growth of palliative care (Kelley and
Meier 2015).
Particularly for cancer patients, due to statutory limits of hospice Medicare reim-
bursement, palliative care has been described as an alternative to hospice and as a
potential solution to the difficulties experienced by cancer patients in accessing hospice
care concurrently with costly curative treatment not covered under hospice care
(Rabow et al. 2010). However, unlike hospice, which has clearly defined benefits as
outlined by law, the Medicare policy approach to palliative care is poorly defined. The
term palliativeis not recognized by Medicare or Medicaid and is instead considered
like any other consultation services. Should cancer patients require home care, reim-
bursement for home care may only be temporarily provided under the traditional
Medicare Home Care benefit which requires skilled need eligibility. Palliative care is
not considered a skilled need under Medicare regulations. Only homebound individuals
with documented skilled nursing services or skilled therapy need can receive limited
services in the home on an intermittent basis (Medicare Rights Center 2019). Demon-
stration projects and Medicare Advantage programs have made efforts to improve this
benefit and offer care coordination; these efforts will be discussed in the Financing
section of the analysis.
Medicare Hospice Benefit
Hospice began to emerge to meet needs for end-of-life care with the rise of the hospice
movement in the United States in the 1970s. In 1982, the Medicare Hospice Benefit
was established under the Tax Equity and Fiscal Responsibility Act (TEFRA) and was
shaped by the findings of a demonstration project. TEFRA included four provisions
related to hospice. First, it specified that individuals on Medicare were allowed to elect
hospice care, in lieu of certain other benefits, during two periods of 90 days each and
one subsequent period of 30 days during the individuals lifetime(Tax Equity and
Fiscal Responsibility Act 1982). Second, it established that Medicare would reimburse
for reasonable costsfor hospice, subject to a ceiling.Third, the law defined hospice
Journal of Policy Practice and Research
care to include items and services furnished to the terminally ill in their homes, on an
outpatient basis, and on a short-term inpatient basis.Finally, it established hospice
program reporting requirements. The passage of this act signaled a policy shift in that
specialized end-of-life care was now considered a federally funded benefit. Since the
inception of the Medicare Hospice Benefit, the benefit has been changed several times
due to the number of patients accessing the benefit, the care needs of different illnesses,
a rise in the number of hospices, the shift to privatization, and increased payment
reforms and regulatory procedures to control costs and avoid abuse (Kelley and Meier
2015).
Methods
This analysis uses Gilbert and Terrells framework (2013), derived from the work of
Eveline Burns (1951), to analyze the Medicare Hospice Benefit and Medicare coverage
for palliative care. The use of Gilbert and Terrells framework was chosen for its focus
on functionalist rather than interpretative methods in policy analysis (OConnor and
Netting 2008). Gilbert and Terrells framework has been used both within the United
States and internationally in order to analyze a variety of policies. Its use in examining
long-term care insurance in China (Wu 2018), mental health policy in the U.S. (Palmer
2016), and Nigeria (Ude 2015) provide examples of its widespread capacity to provide
insight into health policy. The framework also includes the core social justice concepts
of equality, equity, and adequacy. The policy areas addressed in this paper can be
complex and often have policy outcomes created by exclusion rather than inclusion, but
Gilbert and Terrells framework has the ability to distill each policy area into key areas
and examine both the overall functioning of the policy and the social justice
implications.
In this analysis, two policies are compared and contrasted to improve understanding
of how these policies impact end-of-life cancer care. This analysis utilizes a descriptive
framework to examine key policy areas and make generalizations related to how the
policies currently address, or have gaps in addressing, the needs of diverse populations
of cancer patients.
In analyzing each policy, and how this policy applies to advanced cancer patients,
four key areas of the policy are considered. First, Gilbert and Terrell ask about the
bases of social allocations,which tell us who is eligible to benefit from the policy.
Second, they suggest investigating the types of social provisionsto be allocated,
which describes the services, benefits, or opportunities provided. Social provisions
generally fall into one of six categories: opportunities, services, goods, vouchers and
tax credits, cash, and power. Third, the delivery of these social provisions is reviewed.
This describes ways in which the services, benefits, or opportunities are provided.
Finally, ways to finance these provisions are examined. This includes the source of
funding, the ways in which funding is transferred to pay for services, and the conditions
which accompany that money.
After this examination of each policy, in the final step of the analysis, social justice
implications of the policies are considered. With particular attention to racial and
socioeconomic inequity, we use Gilbert and Terrells interpretation of the values of
equality, equity, and adequacy to examine social justice implications of each policy.
Journal of Policy Practice and Research
Equality refers to whether services, benefits, and opportunities are allocated in a way
that equalizes the distribution of resources and opportunities, while equity examines
whether services, benefits, and opportunities are allocated in proportion to the recipi-
entscontributions to society or other measures of deservedness or merit. Adequacy
asks whether services, benefits, and opportunities are allocated in a way which provides
a decent standard of material well-being, regardless of whether they are given equally
or by merit.
Analysis of Four Key Areas of Palliative Care and Medicare Hospice
Benefit
Basis of Allocations
Palliative Care Cancer patients who may benefit from symptom management can
access a specialist in palliative care medicine for supportive patient-centered care visits
to address symptom management whether an illness is potentially curable, chronic, or
life-threatening, and have a fee-for-service provider visit reimbursed by Medicare part
B (Taylor et al. 2017). In 2016, palliative care consults were reported to be involved
with approximately 5% of all hospitalized patients in the US, with the majority of these
(27%) cancer patients (National Palliative Care Registry 2017). Primarily used as a
consultation service in hospitals, over 1800 hospitals now have palliative care available
in the United States USA, with larger hospitals and not-for-profit hospitals being more
likely to have a palliative care team or dedicated hospital unit (Medicare Payment
Advisory Commission, 2018; Morrison 2013).
Palliative outpatient services in the United States are less common but are emerging
in free standing clinics and integrated into some outpatient cancer practices. Under
Medicare part B, fee-for-service billing for palliative care specialists is primarily
available for physician or nurse practitioner visits. Mental health services and concrete
service work provided by social workers to patients in palliative care may be more
difficult to access. Social work billing requires a licensed clinical social worker to
provide services only upon diagnosis of a mental health illness, which may not apply to
every cancer patient (Parman 2012,2018). Low use of DSM criteria in palliative care
social work practice, and thus billing for social work visits, is suggested by a national
social work job analysis that surveyed 482 palliative care social workers (Head et al.
2019). Utilizing DSM criteria to guide assessment and determination of needswas
reported to be the least important task out of 152 identified tasks that define the roles of
palliative care social work (Head et al. 2019 p. 25). This same study found that
identification of support systems(Head et al. 2019 p. 26) was the most important
palliative care social work task, indicating a non-pathological approach to social work
practice in palliative care that may be in the best interest of the patient, but does not
provide a revenue-generating option for social work visits.
Medicare Hospice Benefit Unlike palliative care, which can refer to an array of different
services, hospice is a program with specific eligibility requirements. For a patient to be
eligible to receive hospice service, he or she must have a referral to an accredited
hospice program, two treating physicianscertification of a 6-month or less prognosis,
Journal of Policy Practice and Research
and a decision between physician and patient to discontinue aggressive therapy
(McGorty and Bornstein 2003). Although private insurance and Medicaid also cover
hospice services, Medicare remains the highest funder of hospice, paying for 84% of
patients in hospice care (Mor and Teno 2016; NHPCO 2018).
Given these numbers, eligibility for hospice services through Medicare can be described
using Gilbert and Terrellsdefinitionsofuniversality(2013). These benefits meet the criteria
for universality because they are available to anyone who qualifies for Medicare, rather than
only being available to those under a certain income level. However, as discussed below,
the implementation of this policy does not result in universal access to hospice care, which
reflects the key issue of access to care, separate from eligibility. Hospice benefit provision
also fits into the category of diagnostic differentiation in allocation, because it is available
only to those who meet the specific criteria described above.
Social Provisions
Palliative Care Social provisions generally fall into one of the six categories, and
palliative care, with its current fee-for-service reimbursement model, can fit the cate-
gory of services. Palliative care, when provided by an interdisciplinary team of
palliative care specialists, can include doctors, nurses, social workers, chaplains, and
others who focus on supportive care and symptom management. Palliative care can
improve access for cancer patients who could not be enrolled on hospice due to needing
palliative radiation or chemotherapy or for those who choose to pursue both curative
and palliative care concurrently, which is not economically sustainable for the hospice
per diem rate to provide (Ventura et al. 2014). Unlike hospice, palliative care may or
may not include additional services or goods such as home care, medication, equip-
ment, volunteers, bereavement counselors, social work, or chaplain services.
Unlike hospice care, palliative care is most often a physician-led service. While
other specialist disciplines are encouraged to be involved in a patients care, no specific
professions are mandated to be part of an interdisciplinary team. Despite the National
Coalition for Hospice and Palliative Cares recommendation for social work service to
be available on palliative care interdisciplinary teams, only 67.7% of palliative care
services in inpatient hospitals include a social worker (NCHPC 2018; National
Palliative Care Registry 2017). Social work presence in specialty outpatient oncology
palliative care practices is even lower, with less than 50% employing social workers in
their practice (Rabow et al. 2010).
Medicare Hospice Benefit Hospice as a system of care is shaped by US health care
policy and in particular, by Medicare reimbursement. Hospice care is generally pro-
vided as a service and/or good. Medicare-certified hospices are obligated to provide
services such as physician services, pastoral care, mental health care, medical social
services, nursing services, home health care, volunteer services, and bereavement care.
Goods provided may include durable medical equipment, medication related to termi-
nal illness, and supplies (Medicare Payment Advisory Commission 2013; NHPCO
2018). The development and continued growth of hospice have been enhanced by cost-
effectiveness, decreased spending, and higher family satisfaction for cancer patients
who choose hospice (Mor and Teno 2016). The Medicare Hospice Benefit reflects a
Journal of Policy Practice and Research
priority for saving federal funds wherever possible, including the cost savings of being
home instead of in the hospital in the final months of life. The provision of hospice in
the home favors those who have the means to either provide in-home care or hire staff
to care for patients 24 hours a day. Research has shown that African-Americans, Latinx,
and those with lower incomes are more likely to be hospitalized in the final days of life
on hospice when caregiving needs increase (Hageman et al. 2018; Hughes and Vernon
2019; NHPCO 2018). Additionally, advanced cancer patients who live in rural areas
and regularly utilize Rural Health Centers (RHC) and Federal Qualified Health Centers
(FQHC) experience additional barriers accessing hospice care due to statutory require-
ments that only physician providers, not health centers, can be reimbursed for hospice
physician services (NHPCO 2019).
Delivery Systems
Palliative Care Palliative care consultation can occur in hospitals, nursing homes, and in
the community. The use of palliative care consultation services has grown rapidly in US
hospitals with nearly 90% of large hospitals (300+ beds) and nearly two-thirds of
hospitals with more than 50+ beds having a palliative care team in 2014 (National
Palliative Care Registry 2017). Educational programs, national organizations, and spe-
cializations in palliative care have contributed to professional development and special-
ization in what is now considered to be a distinct subspecialty among different disciplines.
Medicare Hospice Benefit In 2016, 56% of hospice patients received care at home and
42% received care in a nursing home (NHPCO, 2018). Hospice in the United States is
primarily provided as a home-based service and inpatient hospice care is provided on a
medically acute, time-limited basis. Although most cancer patients express a desire to
be at home, many cancer patients continue to be hospitalized during their dying process
(Jarosek et al. 2016; Teno et al. 2018).
Many caregivers are surprised to discover that hospice has a limitation on care and
services provided to patients and that family members, or privately hired caregivers, are
designated as primary caretakers. Since the Medicare Hospice Benefit does not adjust
for social and non-skilled caregiving needs of patients and instead offers a universal
benefit to all enrolled hospice patients regardless of caregiver and financial supports,
the limited amount of caregiving assistance provided is delivered in time-limited visits
to support an intact caregiving system with a capacity for providing 24-hour care for
their loved one. Similar to the U.S., in the UK, the majority of hospice care occurs in
homes. However, unlike the U.S., UK citizens are entitled to a career assessment and a
patient needs assessment for the purpose of providing individualized care plans to
include more generous in-home care services that adjust to the psychosocial conditions
of the patient (National Health Service n.d.).
Financing
Palliative Care Financing for palliative care is a key concern in all areas of its
implementation. Palliative care is treated by Medicare and other funders in the same
Journal of Policy Practice and Research
way as other specialist medical services, such as oncology, cardiology, or dermatology.
Palliative care visits are available through a fee-for-service payment model, but reim-
bursement under Medicare is available only for physicians and professionals who can
bill for service visits (Morrison 2013). This approach may not adequately fund other
professional aspects of palliative care, including nursing, psychosocial, and spiritual
care services. Currently, palliative care providers can bill Medicare part B for profes-
sional medical services (those provided by a physician, physicians assistant, or nurse
practitioner). Regarding social work services, outpatient palliative care service can bill
for psychotherapy with a DSM-V diagnosis for individual, group, or family sessions,
but cannot bill for evaluation and management services or for managing complex social
issues such as gaps in insurance coverage, financial and food insecurity, housing
instability, and other social problems which disproportionally impact persons from
marginalized populations and can be just as essential for the palliative care cancer
patient (Parman 2012,2018).
As the hospital industry shifts to the reimbursement model of value-based purchas-
ing (VBP), hospitals have been incentivized to implement patient-centric care models,
such as palliative care, to receive Centers for Medicare and Medicaid Services
payment for hospitals that meet quality care measures (Centers for Medicare and
Medicaid Services 2019; Kelley and Meier 2014). A reimbursement model of quality
care and VBP in palliative care fits the social provision category of services for the
advanced cancer patient, while at the same time, transferring the power of delivery and
availability of this service to the hospital, affecting opportunities.
Several innovative palliative care models are being piloted and supported through
CMS grants. One such program, the four-season model, implemented an interdisci-
plinary team model for palliative care patients, including cancer patients with metastatic
disease, offering supportive home visits and videoconferencing consults for mostly
homebound rural patients (Taylor et al. 2017). The pilot program has shown evidence
of decreased spending in end-of-life care and increased family satisfaction and hospice
enrollment. However, the program faces uncertainty in financial sustainability under
current Medicare billing structure. Concerns related to public support of policies to
expand Medicare coverage of community-based palliative care programs include
increasing Medicare part B spending, which is mostly funded by participant premiums
and could result in a direct increase to consumers, to reduce Medicare part A spending,
which is funded primarily by payroll taxes (Taylor et al. 2017).
Medicare Advantage programs have shown substantial growth in the past decade
with approximately 34% of eligible Medicare participants enrolled in some form of
privatization of their Medicare benefit, with anticipated growth to nearly 47% in the
next 10 years (Jacobson et al. 2019). Initiatives that allow for expanded use of palliative
care have been introduced in several private Medicare Advantage plans. Evaluation
research, primarily conducted with the support of the private insurers who design these
programs, has shown promising results in reducing costs and improving hospice
utilization (Baquet-Simpson et al. 2019; Lustbader et al. 2017). However, the variabil-
ity of palliative care benefits between different insurers calls into question how to
protect highly vulnerable beneficiaries with complex care needs in a competitive end-
of-life health care market economy focused on cost savings and generating profit from
the business of dying (Rahman 2017). While the private insurance market does allow
for some flexibility, the risk of unequal end-of-life care provision could potentially
Journal of Policy Practice and Research
impact the most vulnerable populations and communities who may not be best situated
to adequately comparison shop for the best insurance plan for end-of-life care provision
(Kelley and Meier 2015; Rahman 2017).
Medicare Hospice Benefit Once primarily provided through agencies with nonprofit
auspices, hospice in the USA has grown in profitability in the health care economy with
most hospices now operating on a for-profit basis. In 2017, there were 2944 hospices
classified as for-profit hospices as compared with 1042 nonprofit providers (NHPCO
2018). This reflects both privatization, a system where public funds are used to pay
non-governmental entities to provide services, and commercialization, services provid-
ed by agencies who make a profit from that service delivery.
Although there are other methods for financing hospice services, the policy of focus
here is the system in which funds come from the Federal Government in the form of
Medicare funds. Plans to test carve-inplans for hospice coverage under Medicare
Advantage plans are planned for 2021 (Parker 2019), but currently, all Medicare
enrollees, including those who participate in Medicare Advantage plans, have all
hospice care services and goods covered under the traditional Medicare Hospice
benefit. This system reflects a centralized system, in which funding comes from the
Federal Government at standardized rates. Regulatory decisions that affect the ways
Medicare authorizes and reimburses expenses are made at the federal level through the
Centers for Medicare and Medicaid Services (CMS), within the US Department of
Health and Human Services.
Unlike the traditional fee-for-service model in health care, hospice care is billed on a
per diem basis, which provides a flat rate for each day an individual is admitted to
hospice, regardless of the amount of care or number of services an individual receives
during that day. In 1986, the benefit was expanded to include individuals in adult
homes and nursing homes and has remained a per diem rate model, shaped by public
policy and need for cost containment. This structure has led to a standardization of care
for all hospice patients. Critics of the policy have described it as promoting a disin-
centive to provide care services, particularly to those individuals with costly care needs,
such as advanced cancer patients (Buck 2009). In 2016, the per diem payment changed
to allow higher rates for routine home care hospice patients ($196 per day for the first
60 days; $154 per day after day 61 (DaVanzo et al. 2019). Service Intensity Add-On
Payments (SIA) were added in 2016 to provide additional revenue and promote quality
improvement by allowing hospices to bill for additional reimbursement for service-
intensive nursing and social work visits during the final 7 days of life (Dehlin 2019).
Recent analysis shows that hospice providers are underutilizing the benefit and nursing
and social work visits in the 7 days prior to death have not significantly increased as a
result of the incentive (Parker 2019).
Social Justice Analysis of Palliative Care and Medicare Hospice Benefit
Palliative Care Gilbert and Terrell highlight four distinct ways in which service delivery
systems can fail, and these are areas in which gaps in social justice become obvious.
These four areas are fragmentation, discontinuity, unaccountability, and inaccessibility.
Journal of Policy Practice and Research
The American Society of Clinical Oncology (ASCO), the leading professional organi-
zation for oncologists, recommends the integration of palliative cancer care into current
practice settings to provide comprehensive cancer care (2019). Despite evidence for
positive outcomes, many cancer patients are still not receiving the benefits that could be
offered with palliative care. Oncologists have been estimated to only refer approxi-
mately 25% of their patients and referral patterns vary greatly among different oncol-
ogists indicating inaccessibility for some cancer patients based on the oncologists
willingness to consult palliative care (Marmo 2014; McGorty and Bornstein 2003).
Due to the unique and challenging care needs ofcancerpatients,andrecognitionthat
social, spiritual, and psychological suffering are of equal importance for palliative care,
the absence of a full team model may not be best meeting the needs of vulnerable
populations. Fragmentation is a significant concern, given that the majority of unmet
needs for patients who receive palliative care are needs that cannot be reimbursed in the
current fee-for-service model, such as spiritual, psychosocial, and social care needs
(Ventura et al. 2014). Services such as non-skilled home care, child care, medical supplies,
transportation, medication expenses, spiritual counseling, and case management may not
be included in insurance reimbursement and may contribute to lower quality of care to
those who do not have adequate caregiving supports, finances, or insurance coverage.
Cancer patients have been shown to have significantly higher out of pocket costs for
palliative care services that are covered under Medicare when compared with those
diagnosed with other chronic illnesses. Financial distress has been shown to contribute
to increased pain, anxiety, and suffering of advanced cancer patients and their care-
givers (Hui and Bruera 2016). Palliative care visits and palliative care medications are
often subject to copays, creating inaccessibility for socioeconomically disadvantaged
individuals who have inadequate or no insurance coverage or income (DAmbruoso
and Walling 2018). Additionally, since palliative care is reimbursed by Medicare part
B, access to such service is only available to Medicare beneficiaries who enroll in part
B and can financially afford to pay a premium which is currently $135.50 per month
(Medicare.gov 2019). Financially vulnerable populations, not eligible for Medicaid, are
most impacted by the cost of these premiums and are therefore less likely to elect
Medicare part B coverage. Black and Latinx beneficiaries are also less likely to have
supplemental insurance to cover out of pocket costs which are associated with the
current per visit payment for palliative care service (Noel-Miller 2017). This violates
the social justice principle of accessibility, as the current funding structure prevents
certain vulnerable populations from accessing palliative care due to cost.
Racial disparities in access to palliative care reflect a care system of systemic
inequality and suggest that like most other health care systems, policies that support
the current palliative care health system favor and maintain a norm of whiteness and
socioeconomic stability. Social determinants of lower palliative care utilization by
marginalized populations have been suggested to be due to lower health literacy,
distrust of medical systems, lack of income or insurance, and geographic isolation
(Hughes and Vernon 2019; NHPCO 2018). In addition, medical providers have been
shown to demonstrate less nonverbal expressions of support and are less likely to offer
quality care options to Black patients, indicating that implicit bias contributes to poorer
communication and trust building, important factors in accessing palliative care
(Jackson and Gracia 2014; Rine 2018). This leads to unaccountability and inadequacy
of protection from potential harm to vulnerable patients.
Journal of Policy Practice and Research
A provision in the hospice benefit also allows for temporary increased reimburse-
ment for continuous home care(CHC), but reviews show that the benefit is rarely
used and difficult to access and caretakers are often not educated about this option to
dissuade requests for this service (MedPac 2018; Rahman 2017). The benefit, like the
General Inpatient Care (GIC) hospice benefit, is accessible during times of acute crisis
and for skilled symptom management, not for custodial care that makes up most care
needs for terminally ill patients (MedPac 2018). In addition to these three levels of care,
inpatient respite care (IRC) is also offered at a slightly higher rate, for no more than five
consecutive days in an inpatient hospice or skilled nursing facility; it cannot supple-
ment care in the home and can occur only once in each billing period (CMS, 2012).
Medicare Hospice Benefit When analyzing hospice through a social justice lens,
accessibility to hospice is a challenge for cancer patients in general and more so for
marginalized subgroups. Cancer diagnoses continue to represent the majority (27.2%)
of all hospice patients; however, cancer also represents the illness with the lowest mean
and median length of stay on hospice (NHPCO 2018). Those with cancer are the
costliest and least cost-effective patients for hospice programs due to high acuity of
care, pain and symptom management needs, and the short lengths of stay compared
with patients with other illnesses (NHPCO 2018;Obermeyeretal.2014).
Intersectionality further impacts disparities inherent in hospice care for cancer patients
as those from marginalized groups experience even lower quality care and worse care
outcomes. While on hospice, African-American hospice patients have less successful
outcomes in symptom management and experience higher rates of hospital admission,
emergency room visits, and disenrollment from hospice care than Whites (Hughes and
Vernon 2019; Rizzuto and Aldridge 2018). This disparity is reflective of the concept of
discontinuity in Gilbert and Terrell because hospice services are more likely to be
discontinued during times of acuity for minorities. Individuals of higher income are
also more likely to die at home than those of lower socioeconomic status (Barclay et al.
2013). This reflects the inaccessibility of death at home for cancer patients with limited
finances, caregiving supports, and other barriers.
Fragmentation is an issue in hospice care for several reasons. Despite the philosophy of
caring for the whole patient, including addressing physical, social, and emotional needs as
equally important in end-of-life care, the inclination for hospices to place primacy on the
physical needs of terminally ill cancer patients persists, meaning that social and emotional
needs tend to be secondary needs addressed by the hospice benefit (Hageman et al. 2018;
Reese 2013). Payment structures and adjustment of the level of care to address physical
symptoms are more generous than those available for high intensity social and spiritual
needs such as a lack of family caregivers, housing insecurity, spiritual and emotional
distress, childcare needs, or inability to hireprivatehelp.Lackoftheseavailablesupports
can limit participation in hospice care for those with higher social needs. This contributes
to poorer outcomes for cancer patients from marginalized populations who as a group
experience higher rates of poverty and social isolation (Hageman et al. 2018;Hughesand
Ver no n 2019). In addition, patients under the care of a for-profit hospice receive fewer
services than those under the care of nonprofit hospices (Doherty 2009). This disparity in
access to services for hospice patients is a significant social justice issue and is specifically
true for cancer hospice patients. For-profit hospices admit a lower number of cancer
patients than not-for-profit hospices and suggest a potential barrier for cancer patients
Journal of Policy Practice and Research
receiving hospice care at for-profit hospices due to the emphasis on cost-effectiveness and
profit (Wachterman et al. 2011).
Policy Action to Address Social Injustice for Advanced Cancer Patients
As we have established, social injustice is present in a number of places within advanced
cancer care. The remainder of this paper suggests methods that social workers can use
within the policy process to address these injustices. The voices of social work in the policy
arena can improve the political process and increase protection of terminally ill cancer
patients. Policy practice that is committed to social justice and informed by policy harms to
disadvantaged and marginalized populations can improve policy discussions about end-of-
life care. A recent job analysis of 482 hospice and palliative care social workers showed that
social workers consider macro practice or engaging in social policy and community
developmentto be of lower importance in job tasks when compared with other more
traditional micro practice roles (Head et al. 2019,p.30).Thisshouldnotstopsocialworkers
familiar with these policy outcomes, such as palliative care social workers and other
medical social workers, from developing skills in policy action that can allow the experi-
ences of their patients to be communicated to policymakers in order to inform policy
change. Social workers need to emphasize integrated practice, utilizing social work skill
sets in both the micro and macro scope of practice to challenge systemic bias and
discrimination and to advocate for policy that promotes equity in palliative care. This can
be done by organizing networks of social workers to engage in political influence cam-
paigns or aligning with political advocacy organizations like Hospice Action Network.
Social workers can become leaders in their communities and agencies to heighten aware-
ness of pending legislation that impacts the lives of advanced cancer patients. Organizations
such as Influencing Social Policy (influencingsocialpolicy.org), the Association for
Community Organization and Social Action (acosa.org), and the Humphreys Institute for
Political Social Work (ssw.uconn.edu/politicalinstitute) have the resources to help social
workers with the specific advocacy tools needed to implement these tasks. Social workers
concerned about this issue should also consider joining the hundreds of social workers who
hold office at the local and state levels and the six social workers in the US Congress
(NASW n.d.)tobringtheirexpertisedirectlytobearincreatingrelevantpolicy.
Social workers who are interested in addressing social injustice in care for
advanced cancer patients have several options. First, they can review their pa-
tientsexperiences with the policies described here as well as other policies, and
document instances in which disparities in care resulted from current policies.
These examples can be shared with agency administrators, professional organiza-
tions, staff members of policymakers, or policymakers themselves in order to
better inform future policy decisions. Second, social workers who are interested
in engaging more actively in advocacy and feel they need more training to do so
effectively can look for continuing education opportunities and request that pro-
fessional organizations provide these training if they are not currently offered.
Third, social workers can advocate within professional organizations and agencies
who may be interested in the elimination of systemic inequality in cancer care to
provide funding for research which examines successful policies as well as
funding for advocacy and social action. Fourth, those who are members and
Journal of Policy Practice and Research
leaders of professional organizations can advocate for these groups to take policy
positions on pending legislation to support policies that promote equality, equity,
and adequacy for end-of-life care policy. Finally, social workers can seek out
advanced training to pursue leadership roles in advocacy and policy and contribute
to responsive and comprehensive service delivery systems in palliative care.
The Medicare Hospice Benefit and Medicare policies which drive treatment and
end-of-life decision-making for advanced cancer patients in palliative care provide
examples of health care policies which present a challenge to social justice and ethical
social work practice. These policies provide help to many terminally ill cancer patients,
but also result in substantially socially unjust effects for members of marginalized
groups. Social workers are encouraged to work toward equality, equity, and adequacy
for the populations with which they work. When examining advanced cancer care
systems through a social justice lens, social workers should carefully examine the
segregated systems of care that they are a part of, and what part they are contributing to
maintaining it. Specifically, in end-of-life care, the lower utilization by Black and
Latinx cancer patients reflects a systemic racial disparity that maintains segregated
care. A close examination of how end-of-life care is provided in this country will reveal
preferential treatment for White and socioeconomically advantaged persons, while at
the same time, employing a direct care workforce dominated by poor women of color
(Campbell 2018). Social workers can sustain a commitment to social justice and service
to vulnerable populations through leadership in critical examinations of systemic bias.
This can start with an anti-racist approach to social work practice in end-of-life care and
a critical examination of policy associated with hospice and palliative care.
Conclusion
Social workers can lead the critical examination of systems of privilege in the hospice
and palliative care industry, and challenge systems that continue to provide better death
experiences to people who are not members of traditionally marginalized groups. A
commitment to a social justice perspective for social workers can help recognize and
direct advocacy efforts to the population of critically ill cancer patients as a marginal-
ized group in a health care culture of curative treatment, profit-making, lack of access to
power, and unequal access to care.
Compliance with Ethical Standards
Conflict of Interest The authors declare that they have no conflict of interest.
Disclaimer The authors confirm that this work is original and has not been published elsewhere, nor is it
currently under consideration for publication elsewhere.
References
Alcaraz, K. I., Wiedt, T. L., Daniels, E. C., Yabroff, K. R., Guerra, C. E., & Wender, R. C. (2019).
Understanding and addressing social determinants to advance cancer health equity in the United States:
a blueprint for practice, research, and policy. CA: a Cancer Journal for Clinicians.
Journal of Policy Practice and Research
American Society of Clinical Oncology. (2019). Palliative care in oncology. Retrieved from https://www.asco.
org/practice-guidelines/cancer-care-initiatives/palliative-care-oncology.
Marmo, S. (2014). Recommendations for hospice care to terminally ill cancer patients: A phenomenological
study of oncologists' experiences. Journal of social work in end-of-life & palliative care, 10(2), 149-169.
Bakitas, M., Lyons, K. D., Hegel, M. T., Balan, S., Brokaw, F. C., Seville, J., Hull, J. G., Li, Z., Tosteson, T.
D., Byock, I. R., & Ahles, T. A. (2009). Effects of a palliative care intervention on clinical outcomes in
patients with advanced cancer: The project ENABLE II randomized controlled trial. Jama, 302(7), 741
749.
Baquet-Simpson, A., Spettell, C. M., Freeman, A. N., Bates, A. M., Paz, H. L., Mirsky, R., Knecht, D. B., &
Brennan, T. A. (2019). Aetnas Compassionate Care Program: Sustained value for our members with
advanced illness. Journal of Palliative Medicine, 22(11), 13241330.
Barclay, J. S., Kuchibhatla, M., Tulsky, J. A., & Johnson, K. S. (2013). Association of hospice patients
income and care level with place of death. JAMA Internal Medicine, 173, 450456. https://doi.
org/10.1001/jamainternmed.2013.2773.
Buck, J. (2009). I am willing to take the risk: Politics, policy and the translation of the hospice ideal. Journal
of Clinical Nursing, 18(19), 27002709. https://doi.org/10.1111/j.1365-2702.2009.02890.x.
Burns, E. M. (1951). The American social security systemThe Social Security Act amendments of 1950.
Boston: Houghton Mifflin.
Campbell, S. (2018). US home care workers: Key facts2018. New York: PHI Retrieved from
https://phinational.org/wp-content/uploads/legacy/phi-home-care-workers-key-facts.pdf.
Centers for Medicare & Medicaid Services. (2012). Medicare Claims Processing Manual: Chapter 11:
processing hospice claims. Centers for Medicare & Medicaid Services website. Retrieved from:
https://www.cms.gov/files/document/chapter-11-processing-hospice-claims.pdf.
Centers for Medicare & Medicaid Services. (2019). Bundled Payments for Care Improvement Advanced
(BPCI Advanced) Initiative. Retrieved from https://innovation.cms.gov/initiatives/bpci-advanced.
Clark, P. (2017). Palliative Care and Hospice: A Paradigm for End-of-Life Care in Developing Nations.
Journal of Advances in Internal Medicine, 6(2), 3844. https://doi.org/10.3126/jaim.v6i2.18541
DAmbruoso, S. F., & Walling, A. M. (2018). Copayments may be a barrier to concurrent clinic-based
palliative care. Journal of Palliative Medicine, 21(6), 744744.
DaVanzo J., Chen D., Greene J. & Dobson A. (2019). Hospice: Leading interdisciplinary care. National
Hospice and Palliative Care Organization. (Policy Brief 3-25). Retrieved from https://www.
dobsondavanzo.com/index.php?src=directory&view=Publications&..\.
Dehlin, C. (2019). Does your hospice team understand service-intensity add on? [White paper] Retrieved from
https://get.wellsky.com/hospice-sia-paper.html.
Doherty, M. E. (2009). Hospice-organizational perspective. Nursing Clinics of North America, 44(2), 233
238.
Fong, R., Lubben, J., & Barth, R. P. (Eds.). (2017). Grand challenges for social work and society. Oxford
University Press.
Gilbert, N., & Terrell, P. (2013). Dimensions of social welfare policy (8th ed.). Boston: Pearson, Allyn, and
Bacon.
Hageman, S. A., Tarzian, A. J., & Cagle, J. (2018). Challenges of dealing with financial concerns during life-
threatening illness: Perspectives of health care practitioners. Journal of Social Work in End-of-Life &
Palliative Care, 14(1), 2843.
Harrison, K. L., & Connor, S. R. (2016). First Medicaredemonstration of concurrent provision of curative and
hospice services for end-of-life care. American Journal of Public Health, 106(8), 14051408.
Head, B., Peters, B., Middleton, A., Friedman, C., & Guman, N. (2019). Results of a nationwide hospice and
palliative care social work job analysis. Journal of Social Work in End-of-Life & Palliative Care, 15(1),
1633.
Hiatt, R. A., & Breen, N. (2008). The social determinants of cancer: A challenge for transdisciplinary science.
American Journal of Preventive Medicine, 35(2), S141S150.
Hughes, M. C., & Vernon, E. (2019). Closing the gap in hospice utilization for the minority Medicare
population. Gerontology and Geriatric Medicine, 5,18.
Hui, D., & Bruera, E. (2016). Integrating palliative care into the trajectory of cancer care. Nature Reviews
Clinical Oncology, 13(3), 159171.
Institute of Medicine (US) and National Research Council (US) National Cancer Policy Board. (2001). In K.
M. Foley & H. Gelband (Eds.), Improving Palliative Care for Cancer: Summary and Recommendations.
Washington (DC): National Academies Press (US) THE NATIONAL ACADEMIES.
Journal of Policy Practice and Research
Jackson, C. S., & Gracia, J. N. (2014). Addressing health and health-care disparities: The role of a diverse
workforce and the social determinants of health. Public Health Reports, 129(2), 5761. https://doi.
org/10.1177/00333549141291S211.
Jacobson, G., Freed, M. Damico, A. & Neuman, T. (2019). A Dozen Facts About Medicare Advantage in 2019
(Data Note).Retrieved from: http://files.kff.org/attachment/Data-Note-A-Dozen-Facts-About-Medicare-
Advantage-in-2019.
Jarosek, S. L., Shippee, T. P., & Virnig, B. A. (2016). Place of death of individuals with terminal cancer: New
insights from Medicare hospice place-of-service codes. Journal of the American Geriatrics Society, 64(9),
18151822.
Kelley, A. S., & Meier, D. E. (2014). Meeting the Needs of Older Adults With Serious Illness. Humana Press.
Kelley, A. S., & Meier, D. E. (2015). The current and potential role of palliative care for the Medicare
population. Generations, 39(2), 112.
Lustbader, D., Mudra, M., Romano, C., Lukoski, E., Chang, A., Mittelberger, J., Scherr, T., & Cooper, D.
(2017). The impact of a home-based palliative care program in an accountable care organization. Journal
of Palliative Medicine, 20(1), 2328.
McGorty, K., & Bornstein, B. (2003). Barriers to physiciansdecisions to discuss hospice: Insights gained
from the United States hospice model. Journal of Evaluation in Clinical Practice, 9(3), 363337.
Medicare,gov. (2019). Part B costs. Retrieved from https://www.medicare.gov/your-medicare-costs/part-B-
costs.
Medicare Payment Advisory Commission. (2013). Report to the Congress. Medicare and the Health Care
Delivery System. Washington, DC: MedPAC. http://www.medpac.gov/documents/Jun13_EntireReport.
pdf
Medicare Payment Advisory Commission (MedPAC). (2018). Report to Congress: Medicare payment policy.
Retrieved from http://www.medpac.gov/docs/default-source/reports/mar18_medpac_entirereport_sec.pdf.
Medicare Rights Center. (2019). Home health basics. Retrieved from https://www.medicareinteractive.org/get-
answers/medicare-covered-services/home-health-services/home-health-basics.
Meier, D. E. (2011). Increased access to palliative care and hospice services: Opportunitiesto improve value in
health care. The Milbank Quarterly, 89(3), 343380.
Mor, V., & Teno, J. M. (2016). Regulating and paying for hospice and palliative care: Reflections on the
Medicare Hospice benefit. Journal of Health Politics, Policy and Law, 41(4), 697716.
Morrison, R. S. (2013). Models of palliative care delivery in the United States. Current Opinion in Supportive
and Palliative Care, 7(2), 201206.
National Association of Social Workers (n.d.) Social workers in state and local office. Retrieved from:
https://www.socialworkers.org/Advocacy/Political-Action-for-Candidate-Election-PACE/Social-
Workers-in-State-and-Local-Office.
National Association of Social Workers. (2004). NASW standards for palliative & end of life care.
Washington, DC: Author.
National Cancer Institute (2019). Annual Report to the Nation: Overall cancer mortality continues to decline;
Special section on adults ages 20 to 49 shows higher cancer incidence and mortality for women than
men. Retrieved from: https://www.cancer.gov/news-events/press-releases/2019/annual-report-nation-2019
National Coalition for Hospice and Palliative Care. (2018). Clinical practice guidelines for quality palliative
care, 4th edition, Richmond, VA. Retrieved from https://www.nationalcoalitionhpc.org/wp-
content/uploads/2018/10/NCHPC-NCPGuidelines_4thED_web_FINAL.pdf.
National Hospice and Palliative Care Organization (2019). NHPCOs facts and figures. Retrieved from:
Retrieved from: https://39k5cm1a9u1968hg74aj3x51-wpengine.netdna-ssl.com/wp-
content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf.
National Health Service. (n.d.). Social Care and Support Guide. Retrieved from: https://www.nhs.
uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-assessments/.
National Hospice and Palliative Care Organization (NHPCO). (2018). Facts and figures: Hospice care in
America. Retrieved from https://www.nhpco.org/sites/default/files/public/Statistics_Research/2017_
Facts_Figures.pdf.
National Palliative Care Registry. (2017). National Palliative Care Registry annual survey summary data.
Retrieved from https://registry.capc.org/wp-content/uploads/2018/07/2017-Data-Summary.pdf.
Noel-Miller. (2017). Medicare beneficiariesput-of-pocket spending for health care, AARP Public Policy
Institute. Retrieved from https://www.aarp.org/ppi/info-2017/medicare-beneficiaries-out-of-pocket-
spending-for-health-care.html.
OConnor, M., & Netting, F. (2008). Teaching policy analysis as research: Consideration and extension of
options. Journal of Social Work Education, 44(3), 159172.
Journal of Policy Practice and Research
Obermeyer, Z., Makar, M., Abujaber, S., Dominici, F., Block, S., & Cutler, D. M. (2014). Association between
the Medicare hospice benefit and health care utilization and costs for patients with poor-prognosis cancer.
Jama, 312(18), 18881896.
Palmer, A. (2016). Health reform and the ACA triple gap: Failing low-income young adults with mental health
needs. Social Work in Mental Health, 14(4), 327341.
Parker, J. (2019). Medicare service intensity add-on underused by hospices. Hospice News.Retrieved from:
https://hospicenews.com/2019/05/20/medicare-service-intensity-add-on-underused-by-hospices/.
Parman, C. (2012). The ABCs of CSW billing. Oncology Issues, 27(2), 1213.
Parman, C. (2018). Billing for social workers. Oncology Issues, 33(3), 89.
Rabow, M. W., Smith, A. K., Braun, J. L., & Weissman, D. E. (2010). Outpatient palliative care practices.
Archives of Internal Medicine, 170(7), 654655. https://doi.org/10.1001/archinternmed.2010.56.
Radbruch, L., & Payne, S. (2009). White paper on standards and norms for hospice and palliative care in
Europe: Part 1. European Journal of Palliative Care, 16(6), 278289.
Rahman, A. N. (2017). Who knew? Hospice is a business. What that means for all of us. The Gerontologist,
57(1), 1218.
Rawls, J. (1971). A theory of social justice. Belknap: Cambridge.
Reese, D. J. (2013). Hospice social work. New York: Columbia University Press.
Reisch, M. (2019). Macro social work practice: Working for change in a multicultural society. San Diego:
Cognella.
Rine, C. M. (2018). Is social work prepared for diversity in hospice and palliative care? Health & Social Work,
43(1), 4150.
Rizzuto, J., & Aldridge, M. D. (2018). Racial disparities in hospice outcomes: A race or hospice-level effect?
Journal of the American Geriatrics Society, 66(2), 407413.
Siegel, R., Ward, E., Brawley, O., & Jemal, A. (2011). Cancer statistics, 2011: The impact of eliminating
socioeconomic and racial disparities on premature cancer deaths. CA: a Cancer Journal for Clinicians,
61(4), 212236.
Silva, V. D. L., Cesse, E. Â. P., & Albuquerque, M. D. F. P. M. (2014). Social determinants of death among the
elderly: A systematic literature review. Revista Brasileira de Epidemiologia, 17, 178193.
Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA). (1982). Pub. L. No. 97248, 96 Stat. 324.
Taylor, D. H., Harker, M., Olson, A., & Bull, J. (2017). How can we increase the use of palliative care in
Medicare? Health Affairs.https://doi.org/10.1377/hblog20170213.058723/full/.
Teno, J. M., Gozalo, P., Trivedi, A. N., Bunker, J., Lima, J., Ogarek, J., & Mor, V. (2018). Site of death, place
of care, and health care transitions among US Medicare beneficiaries, 2000-2015. Jama, 320(3), 264271.
https://doi.org/10.1001/jama.2018.8981.
The Kaiser Family Foundation. (2018). Population Distibution by Race/Ethnicity Retrived from: https://www.
kff.org/other/state-indicator/distribution-by-raceethnicity/?currentTimeframe=0&sortModel=%7B%22
colId%22:%22Location%22,%22sort%22:%22asc%22%7D#note-1.
Ude, P. U. (2015). Policy analysis on Nigerian Lunacy Act (1958): The need for a new legislation. Journal of
Psychiatry, 19(1), 16.
Vanidestine, T., & Aparicio, E. M. (2019). How social welfare and health professionals understand race,
racism, and whiteness: A social justice approach to grounded theory. Social Work in Public Health,114.
Ventura, A. D., Burney, S., Brooker, J., Fletcher, J., & Ricciardelli, L. (2014). Home-based palliative care: A
systematic literature review of the self-reported unmet needs of patients and carers. Palliative Medicine,
28(5), 391402.
Wachterman, M. W., Marcantonio, E. R., Davis, R. B., & McCarthy, E. P. (2011). Association of hospice
agency profit status with patient diagnosis, location of care, and length of stay. JAMA, 305(5), 472479.
World Health Organization. (n.d.). WHO definition of palliative care. Retrieved from http://www.who.
int/cancer/palliative/definition/en/.
Wu, S. (2018). Local experience and reflection on Chinas long-term care insurance system: Based on
Gilberts social welfare policy analysis framework. Advances in Social Science, Education and
Humanities Research, 252, 586591.
Xu, J., Murphy, S. L., Kochanek, K. D., Bastian, B., & Arias, E. (2018). Deaths: Final data for 2016, National
Vital Statistics Reports, 67(5), Hyattsville, MD: National Center for Health Statistics. Retrieved from
https://www.cdc.gov/nchs/data/nvsr/nvsr67/nvsr67_05.pdf.
Publishers Note Springer Nature remains neutral with regard to jurisdictionalclaims in published maps and
institutional affiliations.
Journal of Policy Practice and Research
... To promote social justice in end-of-life care, all populations need to experience equity in palliative care and identified barriers experienced by specific populations should be the focus of social action, advocacy, and practice innovation for palliative care social workers. Marginalized populations have poorer outcomes such as higher mortality and higher likelihood of hospitalization during the dying process, along with being less likely to die at home and less likely to be referred to palliative care (Hughes & Vernon, 2019;Kramer et al., 2005;Marmo & Lane, 2020). ...
Article
Full-text available
Job satisfaction and organizational commitment are critical factors in retention of qualified and experienced social workers. Palliative care organizations may struggle to retain social workers who question if the organization’s practices are in conflict with social work values of social justice and equity. Improving palliative care social workers’ job satisfaction and organizational commitment can be a pathway to keeping palliative care social workers in their jobs. Aims of this study were to explore how social justice influences palliative care social workers’ organizational commitment and intention to stay in their jobs, and if these associations were mediated by job satisfaction. A cross-sectional, survey design, administered online, with a sample of 127 palliative care social workers was used. Findings suggest that job satisfaction mediates the relationship between an organization that establishes a norm of social justice and organizational commitment, this in turn, makes palliative care social workers less likely to want to leave their jobs.
Article
Full-text available
Background: Medicare spends about 20% more on the last year of life for Black and Hispanic people than White people. With lower hospice utilization rates, racial/ethnic minorities receive fewer hospice-related benefits such as lesser symptoms, lower costs, and improved quality of life. For-profit hospices have higher dropout rates than nonprofit hospices, yet target racial/ethnic minority communities more through community outreach. This analysis examined the relationship between hospice utilization and for-profit hospice status and conducted an economic analysis of racial/ethnic minority utilization. Method: Cross-sectional analysis of 2014 Centers for Medicare & Medicaid Services (CMS), U.S. Census, and Hospice Analytics data. Measures included Medicare racial/ethnic minority hospice utilization, for-profit hospice status, estimated cost savings, and several demographic and socioeconomic variables. Results: The prevalence of for-profit hospices was associated with significantly increased hospice utilization among racial/ethnic minorities. With savings of about $2,105 per Medicare hospice enrollee, closing the gap between the White and racial/ethnic minority populations would result in nearly $270 million in annual cost savings. Discussion: Significant disparities in hospice use related to hospice for-profit status exist among the racial/ethnic minority Medicare population. CMS and state policymakers should consider lower racial/ethnic minority hospice utilization and foster better community outreach at all hospices to decrease patient costs and improve quality of life.
Article
Although cancer mortality rates declined in the United States in recent decades, some populations experienced little benefit from advances in cancer prevention, early detection, treatment, and survivorship care. In fact, some cancer disparities between populations of low and high socioeconomic status widened during this period. Many potentially preventable cancer deaths continue to occur, and disadvantaged populations bear a disproportionate burden. Reducing the burden of cancer and eliminating cancer‐related disparities will require more focused and coordinated action across multiple sectors and in partnership with communities. This article, part of the American Cancer Society's Cancer Control Blueprint series, introduces a framework for understanding and addressing social determinants to advance cancer health equity and presents actionable recommendations for practice, research, and policy. The article aims to accelerate progress toward eliminating disparities in cancer and achieving health equity.
Article
Background: In 2004, Aetna, a national health insurer, launched the Aetna Compassionate Care Program (ACCP) targeting members diagnosed with an advanced illness with a view to increase access to palliative care and hospice services. Objective: The objective of this study is to evaluate the impact of ACCP on health care utilization and hospice enrollment among enrolled members. Methods: This was a retrospective cohort study comparing participants in ACCP to a matched control group using a propensity score method. The study group consisted of Aetna Medicare Advantage members who participated in the ACCP between January 2014 and June 2015. Potential control group members were those who were not identified by the predictive model nor were referred to the ACCP program through other means. The primary outcomes of interest were hospice use measured as percent of members electing hospice and median number of days in hospice; health care utilization and medical costs measured as rates and medical costs associated with acute inpatient admissions, emergency room, primary care, and specialty visits in the 30 and 90 days before death. Results: Participants in the ACCP program were 36% more likely to enroll in hospice (79% vs. 58%, p < 0.0001) and had reduced acute inpatient medical costs ($4169 vs. $5863, p < 0.0001) driven primarily by fewer inpatient admissions (860 vs. 1017, p < 0.0001) in the last 90 days of life. Conclusions: Advanced illness case management programs such as ACCP can improve access to hospice and improve patient outcomes while reducing unnecessary admissions in the last 90 days of life.
Article
Social welfare and health professionals continually practice within communities, either directly as practitioners or indirectly by supervising students and co-workers. The current study investigated how social welfare and health professionals conceptualized race, racism, and whiteness in health disparities discourse. Employing constructivist grounded theory, through a social justice lens, the researchers developed a theoretical model based upon the collective experiences of social workers, nurses, and physicians. The analysis revealed four theoretical categories that characterized facets of how social welfare and health professionals’ understand race, racism, and whiteness: (1) self-defined skin color; (2) (pre)judgments and discrimination; (3) privilege and power; and (4) conceptual conflation and unfamiliarity. The findings suggest more emphasis during training and in workplace settings on concepts such as power, inequities, and structural racism may significantly improve the efficacy and scope of REHD interventions by expanding social welfare and health professionals’ understanding of race, racism, and whiteness beyond interpersonal level interactions.
Article
The role of the hospice and palliative social worker is often ambiguous and misunderstood by colleagues and fellow team members. One reason for this is the lack of identified, clearly delineated roles, skills, and tasks employed by these specialty social workers in their daily work. This article summarizes the first nationwide job analysis of hospice and palliative social workers. A contextual, cross-sectional survey design was used to identify current and relevant job tasks from practicing hospice and palliative social workers. A sample of 482 social workers representing 46 states responded to a survey that included demographic questions and ranking of 152 tasks and importance to the position. Tasks were categorized into four broad categories: assessment and reevaluation; planning and intervention; death, grief, and bereavement; and professionalism; which includes subcategories consisting of multiple tasks and skills. Respondents identified performing a psychosocial assessment from a patient/family centered care perspective, assessment of the patient’s current and desired quality of life and of coping skills as the tasks most important to their role. This outline of the role of the hospice and palliative social worker was then used in the development of an evidence-based certification exam that may be required of those who want to receive specialty certification in the field.
Chapter
The Grand Challenges for Social Work (GCSW) focuses on big, important and compelling problems for all of American society. Sponsored by the American Academy of Social Work and Social Welfare, the 12 Grand Challenges address issues of healthy youth development, the health gap, family violence, long and productive lives, social isolation, homelessness, changing climate environments, technology for social good, smart decarceration, economic inequity, financial capacity, and equal opportunity and justice. GCSW is designed to promote scientific and transformative innovation in social work, engage the social work profession in strengthening the ties among social work organizations, foster transdisciplinary research, create greater acknowledgement of social work science within the discipline and by other and related disciplines, and expand the student pipeline into the social work profession.
Article
Importance End-of-life care costs are high and decedents often experience poor quality of care. Numerous factors influence changes in site of death, health care transitions, and burdensome patterns of care. Objective To describe changes in site of death and patterns of care among Medicare decedents. Design, Setting, and Participants Retrospective cohort study among a 20% random sample of 1 361 870 decedents who had Medicare fee-for-service (2000, 2005, 2009, 2011, and 2015) and a 100% sample of 871 845 decedents who had Medicare Advantage (2011 and 2015) and received care at an acute care hospital, at home or in the community, at a hospice inpatient care unit, or at a nursing home. Exposures Secular changes between 2000 and 2015. Main Outcomes and Measures Medicare administrative data were used to determine site of death, place of care, health care transitions, which are changes in location of care, and burdensome patterns of care. Burdensome patterns of care were based on health care transitions during the last 3 days of life and multiple hospitalizations for infections or dehydration during the last 120 days of life. Results The site of death and patterns of care were studied among 1 361 870 decedents who had Medicare fee-for-service (mean [SD] age, 82.8 [8.4] years; 58.7% female) and 871 845 decedents who had Medicare Advantage (mean [SD] age, 82.1 [8.5] years; 54.0% female). Among Medicare fee-for-service decedents, the proportion of deaths that occurred in an acute care hospital decreased from 32.6% (95% CI, 32.4%-32.8%) in 2000 to 19.8% (95% CI, 19.6%-20.0%) in 2015, and deaths in a home or community setting that included assisted living facilities increased from 30.7% (95% CI, 30.6%-30.9%) in 2000 to 40.1% (95% CI, 39.9%-30.3% ) in 2015. Use of the intensive care unit during the last 30 days of life among Medicare fee-for-service decedents increased from 24.3% (95% CI, 24.1%-24.4%) in 2000 and then stabilized between 2009 and 2015 at 29.0% (95% CI, 28.8%-29.2%). Among Medicare fee-for-service decedents, health care transitions during the last 3 days of life increased from 10.3% (95% CI, 10.1%-10.4%) in 2000 to a high of 14.2% (95% CI, 14.0%-14.3%) in 2009 and then decreased to 10.8% (95% CI, 10.6%-10.9%) in 2015. The number of decedents enrolled in Medicare Advantage during the last 90 days of life increased from 358 600 in 2011 to 513 245 in 2015. Among decedents with Medicare Advantage, similar patterns in the rates for site of death, place of care, and health care transitions were observed. Conclusions and Relevance Among Medicare fee-for-service beneficiaries who died in 2015 compared with 2000, there was a lower likelihood of dying in an acute care hospital, an increase and then stabilization of intensive care unit use during the last month of life, and an increase and then decline in health care transitions during the last 3 days of life.