Death in hospice facility less common among rural vs. urban residents with blood cancer
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Patients with hematologic malignancies who resided in rural areas had a lower likelihood of death in a hospice facility but higher likelihood of dying in a nursing facility than their urban counterparts, according to study results.
The findings, published in Blood Advances, underscore the fact that advances in end-of-life care in rural areas do not equal those of cities and suburbs, according to a press release.
Rationale and methods
More than 55,000 people in the United States die each year of hematologic malignancies, such as leukemia or lymphoma, and these individuals frequently receive aggressive care toward the end of their life, according to S.M. Qasim Hussaini, MD, MS, researcher at Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University.
They are also more likely to die in a hospital than those with solid tumors, Hussaini told Healio.
“Good care for these individuals is dependent on a health care infrastructure that considers the relevant needs specific to this population,” Hussaini said. “Hospice care is key here, as it focuses on skilled care from trained providers who assist with symptom management for someone nearing the end of their life. However, about 46 million Americans, or 15% of the U.S. population, live in rural areas where there are notable gaps in health care funding and access to hospice care.”
Hussaini and colleagues examined disparities in place of death among individuals with hematologic malignancies who resided in rural vs. urban areas. They assessed data on different sites of death, including home, nursing home, hospice center or hospital, from the CDC Wide-ranging Online Data for Epidemiologic Research database.
Key findings
Overall, researchers identified 1,009,717 deaths due to hematologic malignancies in the U.S. between 2003 and 2019. The majority (49.7%) of deaths occurred in predominantly large metropolitan areas, followed by 31.8% in small or medium metropolitan areas and 18.5% in rural areas.
Results showed deaths in hospice facilities occurred more commonly in large metropolitan areas (OR = 1.66; 95% CI, 1.64-1.67) and small or medium metropolitan areas (OR = 2.14; 95% CI, 2.12-2.16) compared with rural areas. Conversely, researchers found deaths less likely in nursing facilities than in a medical facility in large metropolitan (OR = 0.67; 95% CI, 0.66-0.67) and small or medium metropolitan areas (OR = 0.87; 95% CI, 0.86-0.87).
Moreover, deaths at home vs. at a medical facility were less common among residents of large metropolitan areas (OR = 0.86; 95% CI, 0.85-0.87), but similar for small or medium metropolitan areas (OR = 1.04; 95% CI, 1.02-1.05), compared with rural areas.
In rural areas, 8.6% of deaths in 2019 occurred in a hospice facility, compared with 15.6% of deaths in small or medium metropolitan areas and 12.8% in large metropolitan areas. Researchers also reported more deaths during 2019 in a nursing facility in rural areas (16.4%) compared with small or medium (12.9%) and large (11.2%) metropolitan areas. They noted similar percentages for deaths at home in rural (37.8%), small or medium (36.5%) and large metropolitan areas (34%).
Study limitations included a lack of information on income and insurance, which may dictate access to resources, and a lack of clinical details relevant to hospice uptake, including cancer diagnosis, therapies received, patient preferences, rate of functional decline, presence of a caregiver and hospice use in other settings.
Implications, future research
The study suggests individuals with hematologic malignancies are not receiving the best possible end-of-life care, according to Hussaini.
“We noted higher home deaths in rural areas, which could reflect stronger family ties and capacity to care for family. However, we interpret with caution,” he said. “Cost of end-of-life care in inpatient hospice is much more costly than home hospice and requires documented symptom burden for Medicare coverage that ends up being a barrier. Rural residents toward end of life may be admitted to critical access hospitals where traditional Medicare is billed. However, this may result in more rural residents in nursing facilities where quality of care at end-of-life is not comparable to a dedicated and trained facility.”
Lower hospice facility uptake in rural areas may be attributed in part to labor, geographic, technological and financial barriers, Hussaini said.
“There are also high operational costs for running clinics, and there are not nearly as many facilities,” he said. “In an urban area, it may take 10 to 15 minutes to reach a patient, but it can sometimes take 3 hours in a rural area. Low broadband access for telehealth, staffing shortages and ambulance availability all affect access to care, as well. All of these can be exacerbated because rural residents are more often self-employed, are less likely to have employee-sponsored insurance and paid medical leave, and many remain Medicaid-ineligible.”
Looking ahead, Hussaini and colleagues plan to explore geographic disparities in mortality and end-of-life care from a county- to state-level basis to identify where obvious gaps exist.
“We are planning to explore this not just in hematologic malignancies, but also in other cancers that contribute to high mortality rates nationwide in the U.S.,” he said. “Our goal is to ultimately tie our research findings to real-world policy changes.”
References:
- Hussaini S, et al. Blood Adv. 2022;doi:10.1182/bloodadvances.2022007276.
- Where you live may shape your access to hospice care (press release). Available at: www.hematology.org/newsroom/press-releases/2022/where-you-live-may-shape-your-access-to-hospice-care. Published June 15, 2022. Accessed June 21, 2022.
For more information:
S.M. Qasim Hussaini, MD, MS, can be reached at shussa11@jh.edu.
Perspective
Back to TopRushil V. Patel, MD
Compared with patients with solid tumor diagnoses, patients with hematologic malignancies face multiple challenges in accessing hospice care. The transition between treating with curative and palliative intent is often unclear, leading to delayed conversations and intense therapies near the end of life. Furthermore, under traditional hospice care, patients with advanced hematologic malignancies are restricted from symptom-alleviating interventions like transfusions and antibiotics.
This analysis identifies yet another obstacle: geography. As the authors note, these findings are alarming and warrant further investigation to ensure patients living in rural areas have equitable access to hospice care.
Although the analysis did not specifically examine home hospice care, the authors rightfully question how prepared the patients who died at home and their caregivers were for the complex end-of-life care needs associated with hematologic malignancies.
The unpredictable disease trajectory renders it difficult to optimally time conversations surrounding end-of-life care. However, clinicians should factor in time needed to coordinate care, especially for patients living in rural areas. Furthermore, models of care should be developed that allow for better coordination of end-of-life care, especially because rural patients may receive treatment at more specialized centers located in urban areas.
Limitations to this analysis include missing variables that could influence the place of death, like disease and treatment characteristics, insurance status, hospice utilization in specific settings, and individual preferences. In addition to accounting for these variables, future work should elicit the experiences of patients, caregivers and clinicians to better understand hospice care delivery in rural settings, especially amidst the COVID-19 pandemic.
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