Hospice Access for Undocumented Immigrants

The 11.2 million undocumented immigrants living in the United States are not covered by the Medicare Hospice Benefit, and most are uninsured.^1,2 Aging of undocumented patients owing to increasing lengths of residence¹ in the United States is likely to increase hospice demand, and undocumented immigrants are the largest demographic group explicitly excluded from Affordable Care Act provisions.³ Clinicians have reported challenges in obtaining hospice for undocumented immigrants⁴; however, little is known about hospice access in this population. Therefore, this study examined hospice agency practices and access for undocumented immigrants.

This nationwide, web-based survey of hospice agencies was part of a larger study of best practices in outreach to minorities conducted between May 2014 and October 2015. Of 230 hospices surveyed, 179 answered questions on undocumented immigrants. All participating hospices completed a letter of agreement (signed by hospices’ executive directors) and the person providing the data provided informed consent. All hospices received $40 for their participation. The study was approved by the Duke University Health System institutional review board. We collected data on hospices’ practices regarding enrollment of undocumented immigrants (unrestricted enrollment vs unavailable or limited in number) as well as number of enrollment requests and number of undocumented immigrants actually enrolled in the preceding year. We used a χ² test to examine associations between hospice characteristics and enrollment practices and logistic regression to identify characteristics that independently predicted likelihood of unrestricted enrollment. We used the C index to assess the proportion of variation in the outcome explained by the model.

Of 179 agencies, 121 (67.6%) offered unrestricted enrollment to undocumented immigrants and 58 (32.4%) either limited the number enrolled or did not enroll undocumented patients (Table). Unrestricted enrollment was more common among not-for-profit vs for-profit hospices (76.9% vs 30.6%, P < .001), independent vs chain-affiliated hospices (71.8% vs 25.0%, P < .001), and those with a larger average daily census (ADC) (P < .01) (Figure). In the multivariate analysis, larger ADC (odds ratio [OR], 5.34; 95% CI, 2.0-14.2) and not-for-profit status (OR, 7.14; 95% CI, 2.56-20.0), but not chain affiliation (OR, 0.37; 95% CI, 0.09-1.57), were independently associated with greater likelihood of offering unrestricted enrollment. The multivariate model explained 79.6% of variation in enrollment practices. Of 114 agencies providing estimates of requests for undocumented patient enrollment in the past year, 60 (52.4%) received referrals, with an average (SD) of 2.06 (4.14) requests per agency. Of the total 235 reported requests, 181 (77%) resulted in enrollment.

In this study, nearly one-third of hospices did not enroll undocumented immigrants or limited the number enrolled, and 23% of referrals were not accepted. Restricted enrollment was more common among for-profit and smaller hospices, which is not surprising given the financial challenges of enrolling patients without a funding source. Hospice reduces health care costs and improves end-of-life care quality.⁵ Undocumented immigrants unable to access hospice may be forced to seek treatment for symptoms and psychosocial needs through emergency services or hospitalization, which may increase costs for health systems and compromise end-of-life care.

This study has several limitations. Of the 230 agencies responding to the full survey, 51 (22.2%) did not complete the survey questions pertaining to undocumented immigrants, and only 15 (8.4%) agencies responding to these questions came from the US West census region, where many undocumented immigrants reside and demand is likely high. Also, the proportion of for-profit hospices was low relative to their representation nationwide. These factors may limit generalizability and lead to overestimation of access.

Our data demonstrate existing demand for hospice for undocumented patients, and suggest hospice access may be disproportionately limited in areas with predominately smaller, for-profit agencies. As the proportion of for-profit hospice agencies continues to grow nationally, barriers to hospice access for undocumented patients may increase. While some cities and states are expanding health care for undocumented immigrants,⁶ for many, health care access remains limited. Based on this study, such limitations persist through end-stage illness. Policies that reduce barriers to hospice for this population may improve end-of-life care and reduce costs.

Corresponding Author: Nathan A. Gray, MD, Duke Palliative Care, DUMC Box 2706, Durham, NC 27710 (nathan.gray@dm.duke.edu).

Published Online: February 6, 2017. doi:10.1001/jamainternmed.2016.8870

Author Contributions: Drs Gray, Kuchibhatla, and Johnson had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Gray, Johnson.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Gray, Johnson.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Kuchibhatla, Johnson.

Obtained funding: Johnson.

Administrative, technical, or material support: Boucher, Johnson.

Study supervision: Johnson.

Conflict of Interest Disclosures: None reported.

Funding/Support: This research was supported by a grant from the National Institute on Aging, R01AG042130.

Role of the Funder/Sponsor: The National Institute on Aging had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Additional Contributions: The authors acknowledge NHPCO, AAHPM, and state hospice and palliative care organizations for their assistance in providing information about the study to their members.