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. Author manuscript; available in PMC: 2026 Oct 8.
Published before final editing as: Am J Hosp Palliat Care. 2026 Feb 19:10499091261428463. doi: 10.1177/10499091261428463

A Multidimensional Narrative Review of Disparities in Hospice Care Use

Komal Patel Murali 1, Gwenneth Wang 2, Daniella Torres 3, Laura Tycon Moreines 4, Abraham A Brody 5, Karen Bullock 6, Leah V Estrada 7
PMCID: PMC13644458  NIHMSID: NIHMS2210792  PMID: 41711149

Abstract

Purpose:

Hospice care is a patient- and family-centered approach to end-of-life care that prioritizes comfort, symptom management, and psychosocial support while foregoing curative treatment. Hospice care improves quality of life and care at the end of life. Despite its benefits, hospice remains underutilized by racially and ethnically diverse people, sexual and gender minorities, and socioeconomically marginalized populations.

Findings:

Guided by the Social Ecological Model, the objectives of this narrative review are to (a) discuss disparities in hospice care use, (b) explore multidimensional levels and factors contributing to such disparities, and (c) outline implications and imperatives for improving access to and use of hospice care. This review revealed that hospice care disparities are shaped by interacting factors across societal, structural, healthcare system, interpersonal, and individual levels. Historical context, policy design, geographic and socioeconomic constraints, clinician communication, and cultural beliefs collectively influence patterns of access, timing, and utilization of hospice care. System-level solutions include integrating hospice referrals into routine care workflows, improving hospice-related policies, strengthening partnerships with community organizations, and transitional care research. Clinicians are uniquely positioned to identify care preferences, advocate for timely referrals and support the hospice transition, and build trust with patients and families at the end of life.

Conclusions:

Efforts across clinical settings, policy, and research are critical to improving hospice care use, and ensuring that all seriously ill individuals benefit from goal-concordant, high-quality hospice care. Reducing hospice care disparities will require coordinated, multilevel interventions that address policy and healthcare system factors while strengthening hospice-related communication and care.

Keywords: hospice care, health policy, end-of-life care

Introduction

Hospice care is a compassionate and holistic approach to end-of-life care, prioritizing the comfort and dignity of patients and their families.1 It involves a multidisciplinary team that manages pain and symptoms while providing emotional, psychological, and caregiving support.1 In addition to reducing emergency department visits and hospitalizations at the end of life, hospice care also enhances patient and family satisfaction, improves pain control, and improves quality of life in the final months of life.2 Hospice care offers a supportive end-of-life environment that addresses the symptom burden, quality of life, and complex care needs of seriously ill individuals and their care partners.3,4

Older adults with serious illness make up the most significant proportion of hospice users in the United States. In 2022, 61.8% of Medicare beneficiaries aged 85 and older used the Medicare Hospice Benefit.1 The population of older adults receiving hospice care typically have one or more serious illnesses, including cancer, Alzheimer’s disease and Alzheimer’s Disease Related Dementias, diabetes, stroke, and cardiovascular disease. Those with serious illness and multiple chronic conditions are also characterized by higher disease burden associated with a higher risk of disability and death, increased healthcare utilization and costs, compromised quality of life, declining functional status, and adverse drug complications.3,5 When aligned with goals, seriously ill older adults may transition to hospice care after discussions with their healthcare providers and families about care preferences at the end of life.6 However, despite the documented benefits of hospice care in conjunction with the increasing availability of resources, disparities in hospice use persist.2,7 Many who experience serious illness in the U.S. may also experience disparities in use of hospice care due to limited access, education, or awareness, and a lack of care strategies that tailor to values, goals, cultures, and preferences.8,9

An Overview of Disparities in Hospice Care Use

Disparities are clear, measurable, and systemic differences in healthcare delivery, outcomes, quality, and access.10 In this review, disparities in hospice care use are defined as systematic, avoidable, and unjust differences in access, quality, timing, and outcomes. These disparities are shaped by structural factors, including socioeconomics, geographic distribution of services and workforce availability, insurance limitations, and healthcare system care delivery and access to care. Disparities in hospice care use have been documented since the early 2000s, commensurate with an increase in the availability of hospice and end-of-life care services throughout the U.S.9,11–13

Racial and ethnic disparities regarding access to, referral to, and use of hospice care services are frequently described in hospice care research and have been well-documented.9,14 Disparities in hospice use are pervasive across serious illness diagnoses. For example, non-Hispanic white (hereafter referred to as White) patients with lung cancer have shorter ICU lengths of stay, lower rates of ER visits, and inpatient lengths of stay compared to individuals of other racial/ethnic groups.15 Furthermore, after adjusting for clinical and sociodemographic factors, enrollment in hospice care is significantly lower for racially and ethnically diverse individuals compared to White individuals with advanced cancers.16 Black and Hispanic older adults with heart failure similarly experience disparities in hospice use.17,18 Black patients within hospice care were less likely to receive care visits in the last two days of life compared to White patients.19 A systematic review of end-of-life care disparities found that nursing homes with a higher proportion of Black residents had a lower probability of using hospice compared to nursing homes with lower proportions of Black residents. The odds decreased for Black residents with congestive heart failure and in low-performing nursing homes.20 Black and Hispanic persons living with dementia are more likely to be hospitalized in the last 180 days of life and less likely to use hospice.7

Individuals who identify as sexual and gender minorities experience persistent disparities in hospice care use, including lower rates of engagement, delayed referrals, and concerns about discrimination within end-of-life settings.21 Experiences of stigma, lack of inclusive communication, and fear of mistreatment can undermine trust and deter timely hospice enrollment. Socioeconomically disadvantaged individuals also face significant barriers, including limited health literacy, reduced access to specialty care, uninsurance or under-insurance, and residence in communities with deprivation.

Conceptual Framework

Such documented evidence of pervasive disparities highlights the critical need to understand the multidimensional factors that influence disparities in hospice use. These disparities stem from a complex interplay of historical, interpersonal, relational, and structural factors. Through in-depth appraisal of these dimensions, nurses and other healthcare professionals can be better informed to advocate for improved access and awareness and education to increase hospice care use. This narrative review of multidimensional factors contributing to hospice care use and disparities is conceptually organized by the Social Ecological Model (SEM).22,23 The SEM is a multilevel framework that conceptualizes health behaviors as shaped by interacting influences across individual, interpersonal, community or healthcare system, policy, and broader societal or historical contexts. Rather than attributing hospice use solely to patient preference or knowledge, the model acknowledges that decision-making is embedded within relational dynamics, institutional practices, reimbursement structures, and longstanding structural inequities. Applying the SEM to this narrative review allowed for systematically exploring how perceptions, values and beliefs, clinician communication, healthcare delivery systems, policy mechanisms such as the Medicare Hospice Benefit, and historical factors collectively shape access to and utilization of hospice care. Therefore, the objectives of this narrative review are to (a) discuss disparities in hospice care use, (b) explore multidimensional levels and factors contributing to such disparities, and (c) outline implications and imperatives for improving access to and use of hospice care.

Multidimensional Factors Contributing to Disparities

Societal and Historical Level Factors

Hospice care is believed to have originated during the Crusades, when religious groups established refuges for the terminally ill. By the 14th through 18th centuries, organized hospices expanded across Europe, particularly in France and the United Kingdom, often led by religious orders caring for impoverished and dying individuals. The modern hospice movement evolved from these foundations, spreading to Ireland, Australia, and the United States by the late 19th and early 20th centuries.

The modern hospice movement began through the work of Dame Cicely Saunders, a British registered nurse and physician.24 She cared for dying patients in the 1940s and opened the first modern hospice called St. Christopher’s Hospice in London. She introduced the idea of specialty care for dying patients during a visit to Yale University, where she lectured health professions students about the concept of hospice care and its impact on providing holistic symptom management to dying patients. In 1978, Florence Wald opened the first official hospice in Connecticut called the Connecticut Hospice, serving adults and children.1

Hospice care gained federal attention in the late 1970s with early legislative efforts to secure funding, culminating in the establishment of the Medicare Hospice Benefit through the Tax Equity and Responsibility Act of 1982. Following evidence demonstrating cost-effectiveness, hospice programs began receiving accreditation in 1984, and although legislative refinements occurred over subsequent decades, the Medicare Hospice Benefit remained in place. By the 2000s, national discussions on end-of-life care increasingly focused on access and disparities, accompanied by expanded research, advocacy, and education efforts led by major hospice organizations. The outcomes of hospice and for whom it was accessible were studied, and findings were disseminated in the medical literature.25 Hospice care research, advocacy, and education efforts have increased to address disparities with the advent of the National Hospice and Palliative Care Organization, Hospice Action Network, and National Hospice Foundation.26

While access to hospice care was often framed around resource availability, early discussions in the 2000s largely overlooked racial disparities in hospice access and use. Additionally, while driven by structural factors and medical mistrust, the historical exclusion of many groups from end-of-life care research and services also deepens disparities.27 A more complete understanding of these disparities requires acknowledging how historical factors along with policy and structural level factors, and underrepresentation in research, have shaped current patterns of hospice use.28

Policy and Structural Level Factors

Structural forces contribute to disparities in hospice care. Access to care as a function of an individual’s ability to pay, access to health insurance or the Medicare Hospice Benefit, or residing where hospice services are readily available affect hospice use.29 For example, living in socioeconomically deprived environments can affect access to hospice care services, especially high-quality care. To address structural causes of limited access, policies such as the Accountable Care Organizations Realizing Equity Access and Community Health (ACO REACH) are aimed at disclosing equitable access to hospice care. The ACO REACH model encourages organizations to implement strategies prioritizing reducing disparities in care delivery, including engaging with underserved populations and identifying gaps in hospice access.30

Geographic isolation and location can determine access to hospice services.31 Historically marginalized populations often live in neighborhoods with fewer healthcare options, higher levels of poverty, and subsequently higher uninsured rates.20 American Indian and Alaska Native communities often face geographic isolation, have limited access to specialty care, and are the least likely to enroll in hospice among historically marginalized communities.32 Rural and suburban areas have fewer Medicare-certified hospice program employees, which can also contribute to low hospice use.33 Neighborhood socioeconomic factors also impact the quality of hospice care patients receive. Individuals residing in socioeconomically disadvantaged neighborhoods are at a greater risk of being discharged alive from hospice, indicating that they often face challenges in accessing and remaining in hospice care.34

Disparities in hospice care are also heightened by for-profit hospices, which may engage in predatory tactics targeting vulnerable populations. Predatory practices often include misleading marketing or aggressive enrollment strategies. Caregivers whose family members received for-profit hospice care reported dissatisfactory experiences than those whose family members received care from not-for-profit hospice.35

Hospice referral and admission practices have also been shown to play a role in contributing to disparities.36 Studying interactions in the context of serious illness communication requires identifying methods for tailored end-of-life communication, including sexual and gender minorities who face significant discrimination and bias when deciding with their partners.37

The Medicare Hospice Benefit is available to individuals eligible for hospice care with a life expectancy of 6 months or less; however, if individuals live longer than 6 months while in hospice, a medical provider must recertify that the individual is terminally ill.2 This extra step might hinder individuals from remaining in much-needed hospice care if there are not enough providers around to complete recertification, and it results in live discharge.38 Also, different providers might define terminal illness differently, adding another layer of complication. According to the benefit, patients may only change their hospice provider once during each benefit period. Patients will presumably not receive high-quality care due to this restriction if there is an issue of poor quality, which is the case in some rural hospice settings.39

Healthcare System and Community Care Level Factors

The broader healthcare workforce, especially physicians, nurses, nurse practitioners, social workers, and physician assistants, and the comfort and training to provide hospice-related communication and counseling affects hospice use.40 The clinician’s role in helping individuals make decisions at the end of life is vital and maintaining open and honest conversations is critical for informed decision-making. Clinicians affect hospice care use through enhancing communication and helping patients and surrogates in overcoming perceptions surrounding hospice benefits.6 Hospice communication and care tools that improve the comprehensiveness of the care provided can enhance communication and transitions. 6,41

Serious illness communication is a skill and necessitates targeted education and training efforts pertaining to hospice care transitions.42 Training that addresses the multilevel barriers and facilitators that influence whether hospice care is ultimately utilized, including prognostic uncertainty, caregiver readiness, cultural beliefs, system-level referral processes, and misconceptions about eligibility may or may not be available to the interdisciplinary care team. However, when patient and family preferences are clarified early, structured discussions about what hospice care offers and what the transition entails increase understanding, reduce decisional conflict, and improve timely referral and enrollment.43 Care managers, nurses, and social workers play a critical role in shaping hospice utilization by initiating goals-of-care conversations, addressing concerns, providing tailored education, and guiding surrogate decision-makers through complex transitions. In coordination with referring medical providers, standardized clinical protocols that integrate evidence-based communication strategies and clear referral pathways directly affect whether eligible patients are referred and enrolled.

As many clinicians are primed to adequately prepare patients and caregivers on the goals and benefits of hospice care and how to ease the transition between care models, their respective curricula and occupational training need culturally responsive training models around serious illness communication and hospice care. Furthermore, continuing educational opportunities should be provided in the workforce to increase confidence and preparedness for end-of-life care while centering humility toward patients.44

Interpersonal and Individual Level Factors

The interpersonal factors contributing to hospice use disparities are numerous but largely understudied. Limited education and awareness of the benefits of hospice care result in the underutilization of services and contribute to disparities.45 For socioeconomically disadvantaged individuals, lack of education and awareness about hospice care and what it offers is a significant barrier to hospice care use. Serious illness communication and palliative care receipt may also influence hospice care use.46,47 End-of-life decision-making is a complex and subjective process that involves a significant amount of emotional distress.48 Studies have demonstrated that clinicians spend less time discussing goals of care with historically marginalized patients, and Black patients report that less information is shared with them.49 Research on clinician implicit bias has provided evidence that these conversations are avoided based on assumptions that historically marginalized populations do not want to engage in end-of-life care planning.50,51 Additionally, delivering effective hospice-related communication when there is an emotional burden requires highly trained clinicians who can deliver effective education counseling.

Cultural norms and practices can impact end-of-life decision-making. For Asian and Pacific Islanders (API), there is discussion about the role that acculturation plays in determining end-of-life decision-making, but the evidence is limited; those who are acculturated are thought to be more likely to use hospice care compared to others.16 In general, APIs are less likely to complete advance directives or use hospice overall, of which understanding is limited. API individuals remain underrepresented in end-of-life care research, resulting in a lack of data, which limits knowledge of the depth and severity of disparities. For Hispanic populations, the use of hospice remains low.7,52 Some research shows disparities might be linked to experiences with immigration status, residential segregation, low-resourced environments, and poverty; however, hospice use studied in Hispanic populations is limited.7,53

Sexual and gender minorities encounter pervasive relational and communication challenges related to hospice care within the healthcare system.37,54 A survey of 865 professional hospice and palliative care providers revealed that 54% believed lesbian, gay, bisexual, and transgender (LGBT) patients were more likely to experience discrimination compared to non-LGBT patients, with 24% of healthcare providers reporting witnessing LGBT discrimination against patients.55

Individual cultural, religious, and spiritual beliefs and perceptions impact decision-making and the use of hospice care at the end of life.41,56,57 The meaning of hospice care is significant to understand through the perceptions of patients and families.56 The influence and measurement of religious and spiritual beliefs on medical and end-of-life decision-making also need further exploration to understand how beliefs may lead to greater or lower hospice use.58 Expanding the evidence base that explores the interplay of culture on perceptions and beliefs related to end-of-life decision-making is urgently needed to overcome disparities in hospice care.27,28,53,57

The underlying relational factors contributing to racial and ethnic disparities in hospice care essentially involve two key groups: family caregivers and clinicians. Family caregivers or surrogate decision-makers are critical advocates for seriously ill individuals nearing the end of life. Communication challenges often arise during hospice decision-making with family caregivers.59 For instance, a patient without family caregiver support is less likely to have a proxy decision-maker at this critical stage.46 Also, lack of understanding or collective acceptance of hospice care within a community may result in negative attitudes surrounding its benefits and eventual use.

Clinicians’ perceptions and readiness to engage in hospice care communication and challenging conversations may influence their ability to educate patients about hospice care and make the subsequent referral.6,40,60 Tailored serious illness communication delivered by clinicians to facilitate the hospice transition requires understanding patient and caregiver perceptions about hospice care so their needs can be addressed, and they can be understood and heard.41,42,46 Low communication about hospice care from providers can also be a barrier to hospice use.61 Low hospice use is compounded by mistrust in the healthcare system due to prior experiences of discrimination from healthcare providers.62 If implicit or explicit bias affects care practices, clinicians may fail to identify populations who might benefit from hospice care, leading to missed opportunities and care.63

Hospice use disparities are influenced at the individual level by variations in knowledge, beliefs, literacy, and emotional readiness that shape how people interpret serious illness and end-of-life care options. Limited awareness of hospice eligibility, services, and benefits can delay referral acceptance or prevent engagement altogether, particularly when individuals lack clear information about prognosis and care goals. Cultural, religious, and spiritual beliefs further influence how patients and families perceive suffering, decision-making authority, and the meaning of hospice care, which may either facilitate or discourage its use.57 Differences in end-of-life care literacy affect individuals’ ability to understand complex medical information, navigate prognostic uncertainty, and evaluate tradeoffs between curative and comfort-focused care. Additionally, emotional burden, anticipatory grief, and fear of abandonment or loss of hope can complicate decision-making, leading to postponed conversations about hospice services.64 Collectively, these factors contribute to patterned differences in hospice use across populations.

Implications of the Review

This review demonstrates that hospice care disparities in use are driven by interacting factors across societal, structural, healthcare system, interpersonal, and individual levels. Historical underpinnings, policy development such as the Medicare Hospice Benefit, geographic and socioeconomic considerations, counseling, referral and enrollment practices, and variability in hospice care collectively shape access, while clinician communication, implicit bias, caregiver readiness, beliefs, and hospice literacy influence decision-making at the point of care. The findings underscore the need for multilevel strategies that include policy reform, workforce strengthening, oversight of hospice quality, culturally sensitive communication training, community engagement, and targeted interventions inclusive of diverse populations. Addressing hospice disparities requires coordinated healthcare system transformation alongside tailored interventions that meet the lived realities of patients and families at the end of life.

From policy standpoint, modifying the definition of terminal illness to include longer prognoses, which could enhance access to and eventual use of hospice care is an initial but crucial step.38 Advocating for more precise identification of eligible patients and addressing the unique needs of patients with multiple chronic conditions such as dementia and heart failure can potentially lead to improved care quality in hospice. Expanding funding for community-based palliative care or creating a new mechanism that supports palliative care integration across clinics in communities could also improve access to hospice care and improve literacy of its benefits.2,45

Research priorities in hospice care should focus on understanding and mitigating the factors that contribute to hospice disparities and developing interventions and care programs that improve education, communication, and the transition to the hospice.43 Implementing successful hospice transition interventions includes understanding and acknowledging cultural beliefs, language barriers, mistrust of the healthcare system, and lack of education related to available services and benefits. New prognostic awareness and symptom management methods are needed to reduce live discharges, another transition associated with hospice care, which can cause additional financial and health burdens on caregivers and patients.64

Hospice care research must continue to include underrepresented and underserved populations and promptly operationalize rich data to inform targeted intervention efforts.65 Perhaps in conjunction with intervention research, researchers can increase qualitative study of cultural, religious, and personal beliefs about end-of-life decision-making and hospice preferences across groups. These findings can help inform targeted intervention strategies.

To improve hospice care use, interventions must be tailored to address the specific needs, preferences, and barriers experienced by different populations. This includes developing strategies that account for variations in health, communication preferences, and prior experiences with the healthcare system. Interventions can focus on enhancing provider communication skills to ensure that discussions about hospice are clear, timely, and responsive to individual concerns and values. Outreach efforts must be designed to meet people where they are—whether through trusted community channels, linguistically appropriate materials, or targeted education campaigns. Additionally, healthcare systems should implement training and protocols that help providers identify and address potential gaps in understanding or access during the decision-making process. Tailored approaches that reflect the lived realities of patients and families are essential to closing gaps in hospice care use and ensuring that individuals receive timely, appropriate end-of-life care.

Social perceptions about death and dying in the U.S. and the decision-making conversations that inevitably emerge are fraught with taboo, misconception, and lack of awareness.66 Many families in the U.S. are surprised when their family members are critically ill or need life-sustaining treatment. It is essential to acknowledge that there remains persistent stigma associated with dying which affects decision-making at the end of life.66 Conversations about death and dying are needed at the individual or interpersonal level to create a societal shift in views related to hospice care. Engaging community health workers and advocates can be crucial to address these disparities and foster such conversations. Interventions including community health workers, care managers, or care navigators across settings can help build trust, improve communication about advance care planning related to end-of-life care, and provide culturally responsive communication for underrepresented and underserved communities.67

Conclusion

In summary, disparities in hospice care use among older adults are substantial and persist across various populations. These disparities are influenced by a complex set of factors, including socioeconomic status, limited healthcare access, gaps in patient-provider communication, and historical mistrust of the medical system. Many individuals are not adequately informed about hospice services, and communication with providers often fails to support informed decision-making. Nonetheless, these challenges present clear areas for intervention. Addressing these disparities will require coordinated efforts across healthcare systems, research, and policy to enhance information delivery, strengthen provider-patient relationships, expand outreach, and ensure that hospice care is accessible and clearly understood across diverse populations.

Figure 1. Multidimensional Hospice Care Use Disparities Conceptually Organized by the Social Ecological Model.

Figure 1.

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depicts multilevel factors contributing to disparities in hospice care use across societal/historical, policy, community, interpersonal, and individual levels organized by the Social Ecological Model (McLeroy et al., 1988).

Funding Statement:

KPM was supported by a career development award from the National Institute on Aging (K23AG083125). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. LVE was supported by the National Palliative Care Research Center Kornfeld Scholars Program.

Footnotes

Conflicts of Interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical Considerations

Not applicable.

Contributor Information

Komal Patel Murali, NYU Rory Meyers College of Nursing, 433 First Avenue, Room 512, New York, NY 10010.

Gwenneth Wang, NYU Rory Meyers College of Nursing, 433 First Avenue, Room 512, New York, NY.

Daniella Torres, NYU College of Arts and Sciences, 32 Waverly Pl, New York, NY 10003.

Laura Tycon Moreines, NYU Rory Meyers College of Nursing, 433 First Avenue, 6th Floor, New York, NY.

Abraham A. Brody, NYU Rory Meyers College of Nursing, NYU Grossman School of Medicine, 433 First Avenue, New York, NY 10010.

Karen Bullock, Boston College School of Social Work, 140 Commonwealth Avenue, Chestnut Hill, MA 02467.

Leah V. Estrada, Icahn School of Medicine at Mount Sinai, 1 Gustave L. Levy Pl, New York, NY 10029.

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