Older black and Asian patients with advanced cancer were less likely than whites to enroll in hospice and more likely to receive high-intensity care at the end of life. Black and Asian patients were more likely to be hospitalized frequently and for prolonged periods and to be admitted to the ICU in the last month of life than whites; they were also more likely to die in the hospital. Hispanic patients enrolled in hospice and used high-intensity care at the end of life at rates similar to whites.
The primary question that these findings raise is the extent to which these differences are due to differences in patient preferences or to disparities resulting from inequities in access to hospice or bias within the healthcare system. A significant body of literature suggests that black patients have a greater preference for high-intensity care at the end of life and a lesser preference for hospice.15–18
Patient preferences may fully or partly explain differences found in the current study, although other studies found that preferences did not account for racial and ethnic differences of advance care planning.17,18
Clarifying the extent to which racial and ethnic differences in end-of-life care are due to cultural differences in care preferences rather than to inequities is important, because the implications for intervention differ depending on the underlying explanation. Finding that differences in end-of-life care are due to patient preferences would suggest the need to develop educational initiatives about cultural differences, whereas finding that differences result from inequities in access to hospice and palliative services would suggest the need to promote access to these services for underserved populations.
These findings build on previous research suggesting lower rates of hospice enrollment for black and Asian patients with cancer than for whites and similar rates for Hispanics and whites.13,19,20
These previous studies examined decedent cohorts of patients diagnosed with all stages of cancer, including those with limited-stage disease. The validity of such retrospective studies have been questioned, because clinicians sometimes find it difficult to predict the end of life with certainty.21
This study, in contrast, used an incident cohort of patients diagnosed with serious life-threatening illness and examined outcomes at the end of life. The consistency of the findings presented here with previous research lends strength to the validity of both approaches.22
Trends established before the end of life may influence these indicators of high-intensity care. For example, blacks are less likely to receive multiple forms of cancer treatment, including surgery for resectable disease, radiotherapy when indicated, and chemotherapy.6
The finding of lower rates of chemotherapy for black than for white patients within 14 days of death may reflect inequities in access to treatment that persist throughout the continuum of care, including the end of life. Similarly, possibly reflecting a long history of poorer access to care, black patients are more likely to identify the ED as their usual source of care;23
10% of black patients with advanced cancer used the ED frequently (≥2 times) in the last month of life, rates higher than any other racial or ethnic group. This finding may reflect greater use of high-intensity care, as well as a trend toward greater use of the ED for care throughout life for black patients. Greater use of the ED for terminal care in blacks is of particular concern given persistent racial disparities in wait times to see a physician and opioid prescribing and in U.S. EDs.5,24
Asian Americans are one potentially vulnerable ethnic group that is understudied with respect to end-of-life care. Little is known about the dying experience of Asians with cancer. A previous study found that Asians dying of cancer were substantially less likely to receive hospice care than whites, especially if they were foreign born.19
A subsequent study showed that hospice enrollment and length of stay varied significantly across Asian/Pacific Islander ethnic subgroups.25
The present study confirms these findings in an incident cohort while also establishing greater usage of high-intensity care at the end of life for Asians with advanced cancer than for whites. The underlying reasons for these differences are poorly understood. One study found that Korean Americans had a more-positive attitude toward life-sustaining treatment than European Americans but had a lower personal desire to receive these treatments.26
Studies of cancer patients in Taiwan suggest considerable discrepancy between patients’ and caregivers’ preferences for end-of-life care.27
In contrast to the experiences of black and Asian patients with advanced cancer, similarities in end-of-life experiences of Hispanic and white patients are noteworthy. The Medicare Hospice Benefit requires the presence of a fulltime caregiver in most cases. Because of strong kinship ties within the Hispanic community,28
this requirement may be less of a barrier for families of Hispanic patients than black or Asian patients, although this hypothesis requires further exploration. Racial and ethnic differences in cultural attitudes toward death in the home versus an institutional setting may partly explain these findings.
This study has several limitations. First, as discussed above, no information on patient preferences, which may have guided care decisions at the end of life, was available. Second, outcomes for seriously ill patients diagnosed initially with limited-stage cancer that subsequently progressed were not examined. Third, the cohort studied was composed of advanced cancers with varying survival times. Six-month survival was higher for patients with stage IV prostate cancer than for patients with stage IIIB or IV lung cancer, for example. Fourth, the study sample did not include the approximately 20% of patients with managed care insurance, because claims for managed care beneficiaries used to study high-intensity care at the end of life are not available. That managed care beneficiaries are more likely to enroll in hospice has been well established;12
less is known about how use of high-intensity care at the end of life differs between Medicare and fee-for-service beneficiaries. Fifth, although some of these data are from late 2001, much of the data are from the 1990s, and trends may have changed in the intervening years. For example, there is some evidence that the difference in hospice enrollment between blacks and whites has decreased over time.29
Sixth, the implications of these findings for patients with noncancer illnesses are unclear. Although black patients are more likely to enroll in hospice with a diagnosis of human immunodeficiency virus/acquired immunodeficiency syndrome than white patients,29
in the absence of large-scale population-based studies of patients with noncancer diagnoses, comparing the use of services at the end of life according to diagnosis alone is problematic, because there is no denominator for comparison. Finally, SEER-Medicare may not be a closed system. Some of these elderly advanced cancer patients, particularly Hispanic and Asian patients, may be returning to their country of ethnic origin to die.30
In conclusion, this study is an important step toward understanding the magnitude and scope of racial and ethnic differences in the end-of-life experience for older adults with advanced cancer. Additional research is needed to investigate the factors for which these “racial” and “ethnic” differences are a proxy. There needs to be a better understanding of the ways in which patient preferences and healthcare system factors contribute to observed racial and ethnic differences in use of hospice and high-intensity care at the end of life. Improved understanding will hopefully lead to interventions that improve end-of-life care for all patients with advanced cancer.