ORIG INAL PAPER

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

Suzanne Marmo1& Shannon R. Lane2

# Springer Nature Switzerland AG 2020

Abstract

Purpose This policy analysis examines key aspects of two policies fundamental towork with terminal cancer patients: the Medicare Hospice Benefit and Medicare policyin 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 effectson 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 caregivingsupport systems, those with higher socioeconomic status, and individuals with stableinsurance coverage.Conclusion The Medicare Hospice Benefit and Medicare coverage for palliative careneed to be better understood by policy practitioners and all practitioners in health caresettings. Advocacy can contribute to improved equity in end-of-life cancer care.

Keywords Oncology. Social justice . End-of-life care . Palliative care . Medicare . Healthpolicy

https://doi.org/10.1007/s42972-020-00003-0

Dedicated to Paul Kapralos.

* Suzanne Marmomarmo–romans@sacredheart.edu

Shannon R. Laneshannon.lane@yu.edu

1 School of Social Work, Sacred Heart University, 3135 Easton Turnpike, Fairfield, CT 06825, USA2 Wurzweiler School of Social Work, Yeshiva University, New York, NY, USA

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Published online: 13 2020May

Introduction

According to the Centers for Disease Control and Prevention, cancer is the secondleading 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 palliativecare are two key policies for cancer patients. Both hospice and palliative care areconsidered to be compassionate care programs with missions dedicated to holistic carefor persons with life-threatening illnesses. Studies show that palliative care utilizationand enrollment in hospice programs prevent pain and suffering for cancer patients,improve satisfaction with care, and are cost-effective options for palliation of symptomsassociated 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 carefor 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 mortalityamong all cancer patients, earlier death, less use of preventive care, lower health careliteracy, and more difficulties managing symptoms are pervasive for non-White cancerpatients, those in rural areas, and those experiencing poverty (National Cancer Institute2019; Rine 2018). The United States has a long history of intentionally, and uninten-tionally, segregating quality cancer care to exclude people who are experiencingpoverty, lack insurance, and are from ethnic minority backgrounds (Alcaraz et al.2019). It has been suggested that this segregation in cancer care laid the foundationfor the development of a health care system with systemic socioeconomic and racialinequality in palliative cancer care (Alcaraz et al. 2019; Hughes and Vernon 2019). Thispaper is designed to highlight the functional points within existing policy that has thepotential to create these inequalities and to lay the foundation for future policyadvocacy 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 thesocial work profession (Reisch 2019). Rawls (1971) is considered to be one of the mostimportant theorists of social justice theory. His concepts include both individual justice,where each individual is entitled to equal rights and should have equal access, anddistributive justice, where resources are distributed equitably (Rawls 1971). Thisdistinction between equality and equity is particularly relevant to advanced cancerpatients. Other social justice theorists have incorporated additional elements or per-spectives on social justice which incorporate the need for a greater societal movementto address the social inequalities of underserved and minority populations (Reisch2019; Vanidestine and Aparicio 2019). Vanidestine and Aparicio (2019) suggest thata social justice perspective must not only address social inequity in health care systemsbut also how the normalization of “whiteness” acts as a “foundational concept in ourcountry’s 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 inpalliative care and hospice in the United States . Within the domains of practiceguidelines, palliative care and hospice providers are advised to address how “social

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justice principles and costs of care are considered in the allocation of resources acrossall populations to improve health outcomes of seriously ill people and addresshealthcare disparities” (NCHPC 2018, p. 53). How providers are to apply social justiceprinciples to their practice is not prescriptive in these recommendations, but thisconceptualization of social justice seems aligned with the National Association ofSocial Worker’s (NASW) Standards for Palliative & End-of-Life Care (2004). NASWdescribes a need for a social justice commitment in professional social work palliativecare practice to “engage in social and political action” to ensure equal distribution ofresources for palliative care patients, with particular focus on eliminating health caredisparities (2004). In the United States , disparities in access and effectiveness in healthcare represent a significant social justice issue and closing the health gap has beendesignated as one of the Grand Challenges for Social Work (Fong et al. 2017). Thepurpose of this analysis is to examine if there are preventable gaps in the ways currenthospice and palliative care policy address the distribution of end-of-life care resourcesfor cancer patients.

Hospice and palliative care in the United States differ in important ways, and thesedifferences are especially apparent among cancer patients due to curative andnoncurative treatment protocols in later stages of the disease process. Palliative careis not restricted to terminal patients only and can be offered concurrently with curativetreatment to those who require symptom management. Hospice is very similar inphilosophy and is a type of palliative care for those with a prognosis of 6 months orless who are no longer seeking curative treatment. For cancer patients, acceptinghospice care requires a choice to stop treatment options such as chemotherapy orradiation, often when they are being used for palliation (Obermeyer et al. 2014). Thisrequirement has been suggested to contribute to declining lengths of stay on hospiceprograms 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, socialdeterminants 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 areexpressed within a number of different groups and populations. African-Americancancer patients have 25% higher mortality rates than White cancer patients. African-American women are 40% more likely to die of breast cancer and African-Americanmen are 2.4 times more likely to die of prostate cancer than Whites with the sameillnesses (Siegel et al. 2011). Vanidestine and Aparicio (2019) describe how differencesin racial health outcomes do not just differ but are disparities in racial health outcomeswhen social determinants are considered avoidable and unjust. Disparities evident insocial determinants of cancer include poor and non-White cancer patients being lesslikely 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 andpopulations in poverty have been shown to be more likely to experience delays incancer treatment due to distrust of the medical establishment, history of racial trauma,

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implicit bias of health care providers, and inability to pay for treatment costs (Alcarazet al. 2019; Rine 2018). Racial and ethnic minorities and individuals who are poor arealso more likely to be diagnosed in advanced stages of cancer, have less access to careoptions in all phases of the disease process, and experience inequity in meeting deathpreferences (Hughes and Vernon 2019; Hiatt and Breen 2008).

When social conditions lead to disparities in mortality outcomes, these conditionscan be described as social determinants of death (Silva et al. 2014). Hospice utilizationin the U.S. shows differences by race and ethnicity, with overall census numbersreflecting 82.5% Caucasian, 8.2% African-American, and 6.4% Hispanic patientsenrolled in hospice (NHPCO 2018) compared with the overall U.S. population per-centages of 60% Caucasian, 12% African-American, and 18% Hispanic (The KaiserFamily Foundation 2018). For terminal cancer patients, disparities in social determi-nants of death reveal that racial and ethnic minorities experience less utilization ofhospice and palliative care, a higher likelihood of difficulties in managing symptomsand experiencing pain, a higher likelihood of hospitalization in final stages of life, and ahigher likelihood of discharge from hospice (Hughes and Vernon 2019; Jackson andGracia 2014; Rine 2018). Utilizing a social justice-informed policy analysis, wequestion systemic power and privilege that is created and maintained by social policiesin 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 whentraditional modalities of treatment may be less effective or symptoms of pain andsuffering from cancer disease process and treatment side effects require inclusion ingoals of care. The policy affects not only the services available and funding to pay forthose services but even the terms used to describe them. For example, a clear distinctionhas been made in the United States between hospice and palliative care as a construct ofUS public policy related to relevant requirements in the Medicare Hospice Benefit. Thisdistinction 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 ofcare (Radbruch and Payne 2009). In Australia andWestern Europe, unlike in the UnitedStates, 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 tosuspend curative treatment (Harrison and Connor 2016). Cancer patients in the UnitedStates in particular are impacted by the hospice limitation on curative treatment as thistype 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 limitsaccess to hospice care due to the financial structure of the hospice benefit (Institute ofMedicine 2001).

The Medicare Hospice Benefit and Medicare coverage for palliative care werechosen for analysis for several reasons. First, Medicare policies which define andestablish coverage for hospice and palliative care have significant effects on all aspectsof health care for this population. Not only is Medicare the primary payor for theseservices, private insurance plans and state Medicaid funds tend to use Medicareguidelines for benefit consideration, meaning that policy decisions made within theMedicare system will likely set the standard of care for non-Medicare patients. Second,

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50% of all Medicare deaths in the U.S. occur while enrolled in hospice programs, yetdisparities in hospice and palliative care utilization by Black, Latinx, and lower incomepopulations suggest unequal service provision in end-of-life care (Hughes and Vernon2019; Rizzuto and Aldridge 2018; Ventura et al. 2014).

Medicare and Palliative Care Benefits

The World Health Organization defines palliative care as “an approach that improvesthe 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 earlyidentification and impeccable assessment and treatment of pain and other problems,physical, psychosocial and spiritual” (n.d., para 1). The creation and recognition ofpalliative 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 andheightening awareness of the need to improve end-of-life care contributed to the needfor professional specialization and therefore the growth of palliative care (Kelley andMeier 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 apotential solution to the difficulties experienced by cancer patients in accessing hospicecare concurrently with costly curative treatment not covered under hospice care(Rabow et al. 2010). However, unlike hospice, which has clearly defined benefits asoutlined by law, the Medicare policy approach to palliative care is poorly defined. Theterm “palliative” is not recognized by Medicare or Medicaid and is instead consideredlike any other consultation services. Should cancer patients require home care, reim-bursement for home care may only be temporarily provided under the traditionalMedicare Home Care benefit which requires skilled need eligibility. Palliative care isnot considered a skilled need under Medicare regulations. Only homebound individualswith documented skilled nursing services or skilled therapy need can receive limitedservices in the home on an intermittent basis (Medicare Rights Center 2019). Demon-stration projects and Medicare Advantage programs have made efforts to improve thisbenefit 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 hospicemovement in the United States in the 1970s. In 1982, the Medicare Hospice Benefitwas established under the Tax Equity and Fiscal Responsibility Act (TEFRA) and wasshaped by the findings of a demonstration project. TEFRA included four provisionsrelated to hospice. First, it specified that individuals on Medicare were allowed “to electhospice care, in lieu of certain other benefits, during two periods of 90 days each andone subsequent period of 30 days during the individual’s lifetime” (Tax Equity andFiscal Responsibility Act 1982). Second, it established that Medicare would reimbursefor “reasonable costs” for hospice, “subject to a ceiling.” Third, the law defined hospice

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care to include “items and services furnished to the terminally ill in their homes, on anoutpatient basis, and on a short-term inpatient basis.” Finally, it established hospiceprogram reporting requirements. The passage of this act signaled a policy shift in thatspecialized end-of-life care was now considered a federally funded benefit. Since theinception of the Medicare Hospice Benefit, the benefit has been changed several timesdue 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 paymentreforms and regulatory procedures to control costs and avoid abuse (Kelley and Meier2015).

Methods

This analysis uses Gilbert and Terrell’s framework (2013), derived from the work ofEveline Burns (1951), to analyze the Medicare Hospice Benefit and Medicare coveragefor palliative care. The use of Gilbert and Terrell’s framework was chosen for its focuson functionalist rather than interpretative methods in policy analysis (O’Connor andNetting 2008). Gilbert and Terrell’s framework has been used both within the UnitedStates and internationally in order to analyze a variety of policies. Its use in examininglong-term care insurance in China (Wu 2018), mental health policy in the U.S. (Palmer2016), and Nigeria (Ude 2015) provide examples of its widespread capacity to provideinsight into health policy. The framework also includes the core social justice conceptsof equality, equity, and adequacy. The policy areas addressed in this paper can becomplex and often have policy outcomes created by exclusion rather than inclusion, butGilbert and Terrell’s framework has the ability to distill each policy area into key areasand examine both the overall functioning of the policy and the social justiceimplications.

In this analysis, two policies are compared and contrasted to improve understandingof how these policies impact end-of-life cancer care. This analysis utilizes a descriptiveframework to examine key policy areas and make generalizations related to how thepolicies currently address, or have gaps in addressing, the needs of diverse populationsof 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 provisions” to be allocated,which describes the services, benefits, or opportunities provided. Social provisionsgenerally fall into one of six categories: opportunities, services, goods, vouchers andtax 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 offunding, the ways in which funding is transferred to pay for services, and the conditionswhich accompany that money.

After this examination of each policy, in the final step of the analysis, social justiceimplications of the policies are considered. With particular attention to racial andsocioeconomic inequity, we use Gilbert and Terrell’s interpretation of the values ofequality, equity, and adequacy to examine social justice implications of each policy.

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Equality refers to whether services, benefits, and opportunities are allocated in a waythat equalizes the distribution of resources and opportunities, while equity examineswhether services, benefits, and opportunities are allocated in proportion to the recipi-ents’ contributions to society or other measures of deservedness or merit. Adequacyasks whether services, benefits, and opportunities are allocated in a way which providesa decent standard of material well-being, regardless of whether they are given equallyor by merit.

Analysis of Four Key Areas of Palliative Care and Medicare HospiceBenefit

Basis of Allocations

Palliative Care Cancer patients who may benefit from symptom management canaccess a specialist in palliative care medicine for supportive patient-centered care visitsto address symptom management whether an illness is potentially curable, chronic, orlife-threatening, and have a fee-for-service provider visit reimbursed by Medicare partB (Taylor et al. 2017). In 2016, palliative care consults were reported to be involvedwith 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 aconsultation service in hospitals, over 1800 hospitals now have palliative care availablein the United States USA, with larger hospitals and not-for-profit hospitals being morelikely to have a palliative care team or dedicated hospital unit (Medicare PaymentAdvisory Commission, 2018; Morrison 2013).

Palliative outpatient services in the United States are less common but are emergingin free standing clinics and integrated into some outpatient cancer practices. UnderMedicare part B, fee-for-service billing for palliative care specialists is primarilyavailable for physician or nurse practitioner visits. Mental health services and concreteservice work provided by social workers to patients in palliative care may be moredifficult to access. Social work billing requires a licensed clinical social worker toprovide services only upon diagnosis of a mental health illness, which may not apply toevery cancer patient (Parman 2012, 2018). Low use of DSM criteria in palliative caresocial work practice, and thus billing for social work visits, is suggested by a nationalsocial work job analysis that surveyed 482 palliative care social workers (Head et al.2019). “Utilizing DSM criteria to guide assessment and determination of needs” wasreported to be the least important task out of 152 identified tasks that define the roles ofpalliative 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 importantpalliative care social work task, indicating a non-pathological approach to social workpractice in palliative care that may be in the best interest of the patient, but does notprovide a revenue-generating option for social work visits.

Medicare Hospice Benefit Unlike palliative care, which can refer to an array of differentservices, hospice is a program with specific eligibility requirements. For a patient to beeligible to receive hospice service, he or she must have a referral to an accreditedhospice program, two treating physicians’ certification of a 6-month or less prognosis,

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and a decision between physician and patient to discontinue aggressive therapy(McGorty and Bornstein 2003). Although private insurance and Medicaid also coverhospice services, Medicare remains the highest funder of hospice, paying for 84% ofpatients in hospice care (Mor and Teno 2016; NHPCO 2018).

Given these numbers, eligibility for hospice services throughMedicare can be describedusingGilbert and Terrell’s definitions of universality (2013). These benefits meet the criteriafor universality because they are available to anyonewho qualifies forMedicare, rather thanonly 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, whichreflects the key issue of access to care, separate from eligibility. Hospice benefit provisionalso fits into the category of diagnostic differentiation in allocation, because it is availableonly to those who meet the specific criteria described above.

Social Provisions

Palliative Care Social provisions generally fall into one of the six categories, andpalliative care, with its current fee-for-service reimbursement model, can fit the cate-gory of services. Palliative care, when provided by an interdisciplinary team ofpalliative care specialists, can include doctors, nurses, social workers, chaplains, andothers who focus on supportive care and symptom management. Palliative care canimprove access for cancer patients who could not be enrolled on hospice due to needingpalliative radiation or chemotherapy or for those who choose to pursue both curativeand palliative care concurrently, which is not economically sustainable for the hospiceper diem rate to provide (Ventura et al. 2014). Unlike hospice, palliative care may ormay 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. Whileother specialist disciplines are encouraged to be involved in a patient’s care, no specificprofessions are mandated to be part of an interdisciplinary team. Despite the NationalCoalition for Hospice and Palliative Care’s recommendation for social work service tobe available on palliative care interdisciplinary teams, only 67.7% of palliative careservices in inpatient hospitals include a social worker (NCHPC 2018; NationalPalliative Care Registry 2017). Social work presence in specialty outpatient oncologypalliative care practices is even lower, with less than 50% employing social workers intheir practice (Rabow et al. 2010).

Medicare Hospice Benefit Hospice as a system of care is shaped by US health carepolicy and in particular, by Medicare reimbursement. Hospice care is generally pro-vided as a service and/or good. Medicare-certified hospices are obligated to provideservices such as physician services, pastoral care, mental health care, medical socialservices, 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; NHPCO2018). The development and continued growth of hospice have been enhanced by cost-effectiveness, decreased spending, and higher family satisfaction for cancer patientswho choose hospice (Mor and Teno 2016). The Medicare Hospice Benefit reflects a

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priority for saving federal funds wherever possible, including the cost savings of beinghome instead of in the hospital in the final months of life. The provision of hospice inthe home favors those who have the means to either provide in-home care or hire staffto 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 lifeon hospice when caregiving needs increase (Hageman et al. 2018; Hughes and Vernon2019; NHPCO 2018). Additionally, advanced cancer patients who live in rural areasand 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 hospicephysician services (NHPCO 2019).

Delivery Systems

Palliative Care Palliative care consultation can occur in hospitals, nursing homes, and inthe community. The use of palliative care consultation services has grown rapidly in UShospitals with nearly 90% of large hospitals (300+ beds) and nearly two-thirds ofhospitals with more than 50+ beds having a palliative care team in 2014 (NationalPalliative 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 and42% received care in a nursing home (NHPCO, 2018). Hospice in the United States isprimarily provided as a home-based service and inpatient hospice care is provided on amedically acute, time-limited basis. Although most cancer patients express a desire tobe 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 andservices provided to patients and that family members, or privately hired caregivers, aredesignated as primary caretakers. Since the Medicare Hospice Benefit does not adjustfor social and non-skilled caregiving needs of patients and instead offers a universalbenefit to all enrolled hospice patients regardless of caregiver and financial supports,the limited amount of caregiving assistance provided is delivered in time-limited visitsto support an intact caregiving system with a capacity for providing 24-hour care fortheir loved one. Similar to the U.S., in the UK, the majority of hospice care occurs inhomes. However, unlike the U.S., UK citizens are entitled to a career assessment and apatient needs assessment for the purpose of providing individualized care plans toinclude more generous in-home care services that adjust to the psychosocial conditionsof the patient (National Health Service n.d.).

Financing

Palliative Care Financing for palliative care is a key concern in all areas of itsimplementation. Palliative care is treated by Medicare and other funders in the same

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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 canbill for service visits (Morrison 2013). This approach may not adequately fund otherprofessional aspects of palliative care, including nursing, psychosocial, and spiritualcare services. Currently, palliative care providers can bill Medicare part B for profes-sional medical services (those provided by a physician, physician’s assistant, or nursepractitioner). Regarding social work services, outpatient palliative care service can billfor psychotherapy with a DSM-V diagnosis for individual, group, or family sessions,but cannot bill for evaluation and management services or for managing complex socialissues such as gaps in insurance coverage, financial and food insecurity, housinginstability, and other social problems which disproportionally impact persons frommarginalized populations and can be just as essential for the palliative care cancerpatient (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 andMedicaid Services 2019; Kelley and Meier 2014). A reimbursement model of qualitycare and VBP in palliative care fits the social provision category of services for theadvanced cancer patient, while at the same time, transferring the power of delivery andavailability of this service to the hospital, affecting opportunities.

Several innovative palliative care models are being piloted and supported throughCMS grants. One such program, the four-season model, implemented an interdisci-plinary teammodel for palliative care patients, including cancer patients with metastaticdisease, offering supportive home visits and videoconferencing consults for mostlyhomebound rural patients (Taylor et al. 2017). The pilot program has shown evidenceof decreased spending in end-of-life care and increased family satisfaction and hospiceenrollment. However, the program faces uncertainty in financial sustainability undercurrent Medicare billing structure. Concerns related to public support of policies toexpand Medicare coverage of community-based palliative care programs includeincreasing Medicare part B spending, which is mostly funded by participant premiumsand 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 decadewith approximately 34% of eligible Medicare participants enrolled in some form ofprivatization of their Medicare benefit, with anticipated growth to nearly 47% in thenext 10 years (Jacobson et al. 2019). Initiatives that allow for expanded use of palliativecare have been introduced in several private Medicare Advantage plans. Evaluationresearch, primarily conducted with the support of the private insurers who design theseprograms, has shown promising results in reducing costs and improving hospiceutilization (Baquet-Simpson et al. 2019; Lustbader et al. 2017). However, the variabil-ity of palliative care benefits between different insurers calls into question how toprotect highly vulnerable beneficiaries with complex care needs in a competitive end-of-life health care market economy focused on cost savings and generating profit fromthe business of dying (Rahman 2017). While the private insurance market does allowfor some flexibility, the risk of unequal end-of-life care provision could potentially

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impact the most vulnerable populations and communities who may not be best situatedto 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 nonprofitauspices, hospice in the USA has grown in profitability in the health care economy withmost hospices now operating on a for-profit basis. In 2017, there were 2944 hospicesclassified as for-profit hospices as compared with 1042 nonprofit providers (NHPCO2018). This reflects both privatization, a system where public funds are used to paynon-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 focushere is the system in which funds come from the Federal Government in the form ofMedicare funds. Plans to test “carve-in” plans for hospice coverage under MedicareAdvantage plans are planned for 2021 (Parker 2019), but currently, all Medicareenrollees, including those who participate in Medicare Advantage plans, have allhospice care services and goods covered under the traditional Medicare Hospicebenefit. This system reflects a centralized system, in which funding comes from theFederal Government at standardized rates. Regulatory decisions that affect the waysMedicare authorizes and reimburses expenses are made at the federal level through theCenters for Medicare and Medicaid Services (CMS), within the US Department ofHealth and Human Services.

Unlike the traditional fee-for-service model in health care, hospice care is billed on aper diem basis, which provides a flat rate for each day an individual is admitted tohospice, regardless of the amount of care or number of services an individual receivesduring that day. In 1986, the benefit was expanded to include individuals in adulthomes and nursing homes and has remained a per diem rate model, shaped by publicpolicy and need for cost containment. This structure has led to a standardization of carefor 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 changedto allow higher rates for routine home care hospice patients ($196 per day for the first60 days; $154 per day after day 61 (DaVanzo et al. 2019). Service Intensity Add-OnPayments (SIA) were added in 2016 to provide additional revenue and promote qualityimprovement 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 nursingand social work visits in the 7 days prior to death have not significantly increased as aresult 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 deliverysystems can fail, and these are areas in which gaps in social justice become obvious.These four areas are fragmentation, discontinuity, unaccountability, and inaccessibility.

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The American Society of Clinical Oncology (ASCO), the leading professional organi-zation for oncologists, recommends the integration of palliative cancer care into currentpractice settings to provide comprehensive cancer care (2019). Despite evidence forpositive outcomes, many cancer patients are still not receiving the benefits that could beoffered 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 oncologist’swillingness to consult palliative care (Marmo 2014; McGorty and Bornstein 2003).

Due to the unique and challenging care needs of cancer patients, and recognition thatsocial, 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 vulnerablepopulations. Fragmentation is a significant concern, given that the majority of unmetneeds for patients who receive palliative care are needs that cannot be reimbursed in thecurrent 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 notbe included in insurance reimbursement and may contribute to lower quality of care tothose who do not have adequate caregiving supports, finances, or insurance coverage.

Cancer patients have been shown to have significantly higher out of pocket costs forpalliative care services that are covered under Medicare when compared with thosediagnosed with other chronic illnesses. Financial distress has been shown to contributeto increased pain, anxiety, and suffering of advanced cancer patients and their care-givers (Hui and Bruera 2016). Palliative care visits and palliative care medications areoften subject to copays, creating inaccessibility for socioeconomically disadvantagedindividuals who have inadequate or no insurance coverage or income (D’Ambruosoand Walling 2018). Additionally, since palliative care is reimbursed by Medicare partB, access to such service is only available to Medicare beneficiaries who enroll in partB 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, aremost impacted by the cost of these premiums and are therefore less likely to electMedicare part B coverage. Black and Latinx beneficiaries are also less likely to havesupplemental insurance to cover out of pocket costs which are associated with thecurrent per visit payment for palliative care service (Noel-Miller 2017). This violatesthe social justice principle of accessibility, as the current funding structure preventscertain vulnerable populations from accessing palliative care due to cost.

Racial disparities in access to palliative care reflect a care system of systemicinequality and suggest that like most other health care systems, policies that supportthe current palliative care health system favor and maintain a norm of whiteness andsocioeconomic stability. Social determinants of lower palliative care utilization bymarginalized 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 beenshown to demonstrate less nonverbal expressions of support and are less likely to offerquality care options to Black patients, indicating that implicit bias contributes to poorercommunication and trust building, important factors in accessing palliative care(Jackson and Gracia 2014; Rine 2018). This leads to unaccountability and inadequacyof protection from potential harm to vulnerable patients.

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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 rarelyused and difficult to access and caretakers are often not educated about this option todissuade requests for this service (MedPac 2018; Rahman 2017). The benefit, like theGeneral Inpatient Care (GIC) hospice benefit, is accessible during times of acute crisisand for skilled symptom management, not for custodial care that makes up most careneeds 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 fiveconsecutive 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 formarginalized subgroups. Cancer diagnoses continue to represent the majority (27.2%)of all hospice patients; however, cancer also represents the illness with the lowest meanand median length of stay on hospice (NHPCO 2018). Those with cancer are thecostliest and least cost-effective patients for hospice programs due to high acuity ofcare, pain and symptom management needs, and the short lengths of stay comparedwith patients with other illnesses (NHPCO 2018; Obermeyer et al. 2014).Intersectionality further impacts disparities inherent in hospice care for cancer patientsas those from marginalized groups experience even lower quality care and worse careoutcomes. While on hospice, African-American hospice patients have less successfuloutcomes in symptom management and experience higher rates of hospital admission,emergency room visits, and disenrollment from hospice care than Whites (Hughes andVernon 2019; Rizzuto and Aldridge 2018). This disparity is reflective of the concept ofdiscontinuity in Gilbert and Terrell because hospice services are more likely to bediscontinued during times of acuity for minorities. Individuals of higher income arealso 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 limitedfinances, caregiving supports, and other barriers.

Fragmentation is an issue in hospice care for several reasons. Despite the philosophy ofcaring for the whole patient, including addressing physical, social, and emotional needs asequally important in end-of-life care, the inclination for hospices to place primacy on thephysical needs of terminally ill cancer patients persists, meaning that social and emotionalneeds 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 physicalsymptoms are more generous than those available for high intensity social and spiritualneeds such as a lack of family caregivers, housing insecurity, spiritual and emotionaldistress, childcare needs, or inability to hire private help. Lack of these available supportscan limit participation in hospice care for those with higher social needs. This contributesto poorer outcomes for cancer patients from marginalized populations who as a groupexperience higher rates of poverty and social isolation (Hageman et al. 2018; Hughes andVernon 2019). In addition, patients under the care of a for-profit hospice receive fewerservices than those under the care of nonprofit hospices (Doherty 2009). This disparity inaccess to services for hospice patients is a significant social justice issue and is specificallytrue for cancer hospice patients. For-profit hospices admit a lower number of cancerpatients than not-for-profit hospices and suggest a potential barrier for cancer patients

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receiving hospice care at for-profit hospices due to the emphasis on cost-effectiveness andprofit (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 advancedcancer care. The remainder of this paper suggests methods that social workers can usewithin the policy process to address these injustices. The voices of social work in the policyarena can improve the political process and increase protection of terminally ill cancerpatients. Policy practice that is committed to social justice and informed by policy harms todisadvantaged 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 thatsocial workers consider macro practice or “engaging in social policy and communitydevelopment” to be of lower importance in job tasks when compared with other moretraditionalmicro practice roles (Head et al. 2019, p. 30). This should not stop social workersfamiliar with these policy outcomes, such as palliative care social workers and othermedical 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 policychange. Social workers need to emphasize integrated practice, utilizing social work skillsets in both the micro and macro scope of practice to challenge systemic bias anddiscrimination and to advocate for policy that promotes equity in palliative care. This canbe 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. Organizationssuch as Influencing Social Policy (influencingsocialpolicy.org), the Association forCommunity Organization and Social Action (acosa.org), and the Humphreys Institute forPolitical Social Work (ssw.uconn.edu/politicalinstitute) have the resources to help socialworkers with the specific advocacy tools needed to implement these tasks. Social workersconcerned about this issue should also consider joining the hundreds of social workers whohold office at the local and state levels and the six social workers in the US Congress(NASW n.d.) to bring their expertise directly to bear in creating relevant policy.

Social workers who are interested in addressing social injustice in care foradvanced cancer patients have several options. First, they can review their pa-tients’ experiences with the policies described here as well as other policies, anddocument 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 tobetter inform future policy decisions. Second, social workers who are interestedin engaging more actively in advocacy and feel they need more training to do soeffectively 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 agencieswho may be interested in the elimination of systemic inequality in cancer care toprovide funding for research which examines successful policies as well asfunding for advocacy and social action. Fourth, those who are members and

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leaders of professional organizations can advocate for these groups to take policypositions on pending legislation to support policies that promote equality, equity,and adequacy for end-of-life care policy. Finally, social workers can seek outadvanced training to pursue leadership roles in advocacy and policy and contributeto responsive and comprehensive service delivery systems in palliative care.

The Medicare Hospice Benefit and Medicare policies which drive treatment andend-of-life decision-making for advanced cancer patients in palliative care provideexamples of health care policies which present a challenge to social justice and ethicalsocial work practice. These policies provide help to many terminally ill cancer patients,but also result in substantially socially unjust effects for members of marginalizedgroups. Social workers are encouraged to work toward equality, equity, and adequacyfor the populations with which they work. When examining advanced cancer caresystems through a social justice lens, social workers should carefully examine thesegregated systems of care that they are a part of, and what part they are contributing tomaintaining it. Specifically, in end-of-life care, the lower utilization by Black andLatinx cancer patients reflects a systemic racial disparity that maintains segregatedcare. A close examination of how end-of-life care is provided in this country will revealpreferential treatment for White and socioeconomically advantaged persons, while atthe 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 serviceto 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 anda critical examination of policy associated with hospice and palliative care.

Conclusion

Social workers can lead the critical examination of systems of privilege in the hospiceand palliative care industry, and challenge systems that continue to provide better deathexperiences to people who are not members of traditionally marginalized groups. Acommitment to a social justice perspective for social workers can help recognize anddirect 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 topower, 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 itcurrently under consideration for publication elsewhere.

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