Hospice is a philosophy of end-of-life care which promises to deliver palliative care consistent with an individual’s goals and values.1 Importantly, hospice and palliative care programs have been shown to not only decrease healthcare costs but also improve patient outcomes at the end-of-life 2. The first hospice program in the United States (US) opened in 1974.3 Since then, the prevalence and utilization of hospice has increased nationwide.3 An aging population and the increasing prevalence of chronic conditions will result in a marked increase in the demand of hospice services. Consequently, it is critical to understand the current disparities in hospice utilization in the US. A better understanding of these disparities identify vulnerabilities in the healthcare system and provide the foundation for interventions which will improve hospice utilization in the future.
The availability of hospice services across the US has increased significantly in the past two decades. In 2014, 67 percent of US hospitals with 50 beds or more had palliative care programs.4 By comparison, in 2008, 53 percent had palliative care programs, and in 2001, 4 only 15 percent had palliative care program.6 Despite the growth in hospice services, it is uncertain whether the increased supply is keeping up with the ever-increasing demand. In the decade ending in 2010, it was estimated that the need for hospice care increased 148.5%.7 Given an aging population and an increasing prevalence of chronic conditions amongst Americans, this demand will only increase in the coming decades.
Summary statistics which capture the availability of palliative care programs across the entire country depict an inaccurate view of what hospice availability looks like locally to many Americans. First, the availability of palliative care programs is very regionally dependent. A 2016 study showed that New England, the Pacific, and the mid-Atlantic had palliative programs in more than 75 percent of their hospitals, whereas representation in south-central regions of the country hovered around 40 percent.4 Less than 33 percent of hospitals had palliative programs in Alaska, Mississippi, and Alabama.4 Hospital size and tax status were also important determinants in whether a given hospital had a palliative care program. Ninety percent of hospitals with more than 500 beds had palliative care programs, and not-for-profit hospitals were 4.8 times likely to have an associated with a palliative care program than for-profit hospitals.4
The availability of hospice programs is a critical factor in modulating hospice utilization. Still, increased availability of palliative care programs does not necessarily mean all populations can access these resources equally. In particular, patients with lower income8 and lower socioeconomic status (SES)9 - 10 are less likely to use hospice facilities compared to patients with a higher income from higher SES. Existing disparities in healthcare accessibility might partly explain this observation. Although the Affordable Care Act increased access to health insurance to numerous Americans, much work must still be done to meet the desired goal of universal coverage.
It would be naive to end a conversation about hospice utilization at the level of accessibility. To maximize the potential benefit of hospice care, we must ensure that providers refer patients to hospice at the appropriate stage of their disease, and patients who are referred become enrolled in palliative care programs. There is current evidence to suggest that neither of these requirements is being accomplished.
A 2017 study showed that the median length of stay in hospice using data from the Chicago Health and Aging cohort was less than two weeks.8 This observation could suggest that providers are referring patients to hospice too late in the course of their disease, or patients are resistant to enrolling in hospice upon referral. While the answer is likely a complex hybrid of the two, the latter is of particular interest since it is closely related to cultural perceptions of palliative care. Cultural beliefs and perceptions of hospice undoubtedly affect who use its services and act as another mechanism which perpetuates inequality. Indeed, higher income, more educated Medicare patients are less likely to be hospitalized at the end-of-life.8
Several studies identified socio-cultural factors which influence palliative care usage in African-Americans: lack of knowledge about hospice as an option for care, preferences for more aggressive therapies at the end-of-life, conflict between patients’ spiritual beliefs and the hospice and palliative medicine philosophy of care, and mistrust in the medical system.11 - 16Such research likely plays an important role in explaining the observation that despite equal access to Medicare hospice benefits, African-Americans are less likely than Caucasians to use this benefit, 7 and in terminally ill older patients, non-whites are less likely to use hospice even after a referral.17
Improving access to palliative care programs is essential to increase the utilization of hospice services. However, a comprehensive plan to improve hospice utilization must also target cultural biases, clarify inaccurate perceptions of hospice care, and help patients navigate an increasingly complex healthcare system. 2016 data from The US Department for Health and Human Services shows that the eighty-five plus population is projected to triple between 2015 and 2040.18 This anticipated demographic change necessitates an urgent response to ensure that existing inequalities in end-of-life care are not exacerbated in the future.