Association Between Hospice Use and Depressive Symptoms in Surviving Spouses

Importance  Family caregivers of individuals with serious illness are at risk for depressive symptoms and depression. Hospice includes the provision of support services for family caregivers, yet evidence is limited regarding the effect of hospice use on depressive symptoms among surviving caregivers.

Objective  To determine the association between hospice use and depressive symptoms in surviving spouses.

Design, Setting, and Participants  We linked data from the Health and Retirement Study, a nationally representative longitudinal survey of community-dwelling US adults 50 years or older, to Medicare claims. Participants included a propensity score–matched sample of 1016 Health and Retirement Study decedents with at least 1 serious illness and their surviving spouses interviewed between August 2002 and May 2011. We compared the spouses of individuals enrolled in hospice with the spouses of individuals who did not use hospice, performing our analysis between January 30, 2014, and January 16, 2015.

Exposures  Hospice enrollment for at least 3 days in the year before death.

Main Outcomes and Measures  Spousal depressive symptom scores measured 0 to 2 years after death with the Center for Epidemiologic Studies Depression Scale, which is scored from 0 (no symptoms) to 8 (severe symptoms).

Results  Of the 1016 decedents in the matched sample, 305 patients (30.0%) used hospice services for 3 or more days in the year before death. Of the 1016 spouses, 51.9% had more depressive symptoms over time (mean [SD] change, 2.56 [1.65]), with no significant difference related to hospice use. A minority (28.2%) of spouses of hospice users had improved Center for Epidemiologic Studies Depression Scale scores compared with 21.7% of spouses of decedents who did not use hospice, although the difference was not statistically significant (P = .06). Among the 662 spouses who were the primary caregivers, 27.3% of spouses of hospice users had improved Center for Epidemiologic Studies Depression Scale scores compared with 20.7% of spouses of decedents who did not use hospice; the difference was not statistically significant (P = .10). In multivariate analysis, the odds ratio for the association of hospice enrollment with improved depressive symptoms after the spouse’s death was 1.63 (95% CI, 1.00-2.65).

Conclusions and Relevance  After bereavement, depression symptoms increased overall for surviving spouses regardless of hospice use. A modest reduction in depressive symptoms was more likely among spouses of hospice users than among spouses of nonhospice users.

The Institute of Medicine’s recent report¹ on improving quality of care near the end of life highlights the need for supporting family caregivers. Despite the fact that family caregivers play a critical role in the care of patients with serious illness, they are at increased risk of poor health. Although there are benefits to providing care,^2,3 caregivers are vulnerable to increased depression⁴ and other health problems^5,6 as well as reduced preventive health behaviors.^7,8 As a consequence, caregiving is associated with increased individual and societal health care costs.^9,10

The growing use of hospice care (currently, 45% of decedents in the United States die during hospice care, with a 21% increase in the past decade)^11,12 reflects one effort to meet the challenge of addressing the multidimensional needs of individuals with terminal illness while simultaneously supporting family members during patients’ illness and after their death. Hospice services are focused on palliative rather than curative care and include medical services, symptom management, spiritual counseling, social services, and bereavement counseling delivered by an interdisciplinary team of professionals for dying patients (ie, prognosis of ≤6 months). Core components of high-quality hospice care include counseling services for family members before and after the patient’s death.¹³ This unique service is bundled into the hospice per diem payment for the patient and is almost universally implemented; according to a national survey,¹⁴ 98% of hospices reported making telephone calls to bereaved family members.

Studies to date have found beneficial effects of hospice use and bereavement support on caregivers, including improved family functioning,¹⁵ better bereavement adjustment,^15-17 improved satisfaction,^16,18,19 decreased depression,^20-22 and fewer unmet needs.²³ However, these studies have been largely limited to patients with cancer, have failed to adequately control for differences between patients who do vs those who do not use hospice, or are subject to recall bias. Although surviving spouses of patients with a range of illnesses who die in hospice care have been shown to live longer than the spouses of patients who do not use hospice,²⁴ prospective national studies that address the potential for selection bias are lacking.

Therefore, we used a national sample to prospectively evaluate the effect of hospice use on depressive symptoms in surviving spouses and, more specifically, the subset of spouses identified as primary caregivers. We hypothesized that hospice use is associated with decreased depressive symptoms in surviving spouses.

The study cohort is from the Health and Retirement Study (HRS), a nationally representative longitudinal survey of community-dwelling US adults 50 years or older.²⁵ Most participants are interviewed via telephone every 2 years. If participants are married, spouses are recruited and surveyed regardless of their age. Survey data are linked for eligible participants with individual Medicare claims. Study participants provided oral informed consent on enrollment and again for linkage to Medicare claims; they received financial compensation. The institutional review boards of the University of Michigan and the Mount Sinai School of Medicine approved this study.

We included HRS participants enrolled in fee-for-service Medicare for at least 6 months prior to death with interviews after death between August 2002 and May 2011 and linked to January 1, 2000, to December 31, 2010, Medicare claims (the most recently available Medicare claims data). Because our primary interest was the effect of hospice use on surviving spouses, we limited our analytic sample to decedents who were married at the time of death and whose spouse completed interviews both before and after the participant’s death. We limited the sample to decedents with at least 1 chronic condition identified in claims data up to 1 year prior to death and excluded decedents whose cause of death was documented as an accident, suicide, or homicide. The analysis was conducted between January 30, 2014, and January 16, 2015.

The HRS assesses depressive symptoms (eg, feeling sad, feeling lonely, and having low energy) at each interview with an 8-item version of the Center for Epidemiologic Studies Depression Scale (CES-D), which is scored as 0 (no symptoms) to 8 (severe symptoms).²⁶ A cutoff score of 3 or more has been used^27,28 as an indicator of clinical depression. For our primary outcome, we determined whether scores improved (ie, reduced depressive symptoms) from the interview before the patient’s death to the next study assessment by at least 1 point (mean [SD] follow-up time, 25.5 [4.4] months). We dichotomized the value of change from before death to after death as an improved CES-D score vs no change or worsening of the score for symptoms from time 1 (before death) to time 2 (after death). Our focus was on depressive symptoms regardless of an indicator of clinical depression because subclinical depression symptoms are associated with adverse outcomes among older adults, including lower quality of life and worsened physical function.^29,30 Because depressive symptoms increase during bereavement,³¹ our primary outcome was symptom reduction and not magnitude of change.

We determined the length of hospice enrollment from individual Medicare hospice claims and determined the date and cause of death from the Centers for Disease Control and Prevention National Death Index (http://hrsonline.isr.umich.edu/index.php?p=resprodinfo&iyear=1027). Although any length of hospice use appears to be correlated with improved quality of care³² and should afford family members bereavement services, the ability of hospices to help family members prepare for the death of a loved one may be hampered by a very short length of hospice stay.²⁰ For this reason, we focused on hospice use of 3 or more days. Because the optimal length of stay in hospice for improvement in patient or caregiver outcomes is unknown, we performed sensitivity analyses using cutoff times of 7 or more days and 1 or more days.

The spouse’s role as primary caregiver was determined by whether the spouse was reported to be the primary helper with the decedent’s activities of daily living or instrumental activities of daily living in the last 3 months of life. These data were reported by the next of kin in the postdeath interview.

We used both propensity score matching and multivariable regression adjustment. Based on previous work,³² we developed propensity scores to control for factors hypothesized to be associated with both likelihood of patient hospice enrollment and spousal depressive symptoms. If 2 factors were highly correlated (eg, decedent and spouse race), only 1 factor was retained. Decedent factors included were net worth, insurance coverage, functional status, residential status, self-reported health, medical conditions, number of chronic conditions, presence of advance directives, and discussion of end-of-life care preferences. Spousal factors included were age, sex, race/ethnicity, educational level, self-reported heath, level of comorbidity, presence of psychiatric illness, and importance of religion. Propensity scores were calculated as a logistic regression of hospice enrollment. The balance of propensity scores was established before matching.

We then matched hospice users to 1 or many decedents who did not use hospice within 0.02 of the SD of the logit of the propensity scores by using matching techniques with replacement. We accounted for multiple matches with weighting.³³ For sensitivity analyses of alternate hospice lengths of stay (1 day and 7 days of hospice use), matching techniques were repeated by retaining 2 groups in each comparison: (1) those who met the specific hospice length of stay requirement and (2) those who had no hospice care or had a shorter hospice length of stay. Finally, matching techniques were repeated in samples restricted to spousal primary caregivers. After balancing, matching was verified by examining standardized differences across treatment groups, variance of covariates before and after matching, and standardized differences across covariates. Standardized differences of less than 10% were considered to be adequate balance.^34,35

We examined bivariate comparisons of unadjusted measures of depressive symptoms using the matched weighted samples with χ² and unpaired 2-tailed t tests. We then conducted a series of multivariate logistic regression analyses for all spouses and the subgroup of spouses who were primary caregivers, measuring reduction in spousal depressive symptoms overall, including all covariates described above and an indicator for year of death to account for secular trends over time. Finally, to examine whether results were sensitive to length of bereavement, we limited our sample to spouses interviewed more than 1 year after the decedent’s death.

A total of 6814 HRS participants died between 2002 and 2010 and had a spouse who completed the postmortem interview. We limited our sample to spouses with linked Medicare data, with fee-for-service Medicare for at least the last 6 months of life, and who were married at the time of death (n = 1617). We further excluded decedents for the following reasons: spouse was missing an interview before death and/or after death (n = 302), the decedent had no documented chronic illness in the past year (n = 49), or the decedent’s cause of death was accident, suicide, or homicide (n = 54). Finally, dyads were excluded because they were missing CES-D spousal data before or after the patient’s death because they had proxy interviews (n = 135) or because of nonresponse (n = 28), or they did not have sufficient covariate data available for propensity score matching (n = 24).

The final unmatched sample included 1025 decedents with a mean (SD) age of 78.1 (7.9) years at death. Of these patients, 74.1% were men, 84.2% were non-Hispanic white, and 64.8% had at least a high school education (Table 1). Thirty percent used hospice for at least 3 days in their last year of life, and individuals who used hospice for at least 3 days did so for a mean of 55.1 days (SD, 79.3; median, 22; range, 3-357 days). Spouses were interviewed a mean of 13.9 (7.5) months before and 11.6 (7.9) months after the decedent’s death. Most surviving spouses were female (74.0%), with a mean age of 74.9 (9.0) years, and 70.7% had at least a high school education. Most spouses (95.3%) were independent in all activities of daily living at baseline.

Before propensity score matching, hospice users and nonusers differed substantially (>10% standardized difference) on the rates of several confounders. In the unmatched sample, individuals who used hospice were more likely than those who did not use hospice to be older (mean age, 78.8 [7.7] vs 77.8 [8.0] years), to be non-Hispanic white (87.5% vs 82.7%), to have an advance directive (64.4% vs 54.4%), and to have a diagnosis of cancer (39.7% vs 21.6%) or dementia (32.7% vs 26.7%).

The final propensity score–matched sample included 1016 spouses: 305 spouses (30.0%) of decedents who used hospice and 711 spouses (70.0%) of decedents who did not use hospice (99.1% of the complete sample). In our matched sample, the observed confounders were balanced (<10% standardized difference) (Table 2).³⁵ Variables that were not included in the matching because of colinearity (eg, decedent’s race) were also found to have adequate balance in the matched sample. The median duration of hospice use among those who used hospice for at least 3 days was 22 (range, 3-357) days, and 43.4% used hospice for at least 30 days.

Within the matched sample, depressive symptoms were common among all spouses before death (mean, 431.6 [230.7] days before death) and did not vary based on hospice use (Table 3). Regardless of hospice use, most spouses had more depressive symptoms over time. The mean (SD) CES-D scores increased from 1.8 (2.0) before death to 2.7 (2.4) after death. Increased CES-D scores were noted in 51.9% of spouses over time (mean [SD] change, 2.56 [1.65]) with no significant difference across the groups.

A subgroup of the sample (24.9%) had improved CES-D scores over time. In the matched sample, 28.2% of spouses of hospice users had improved CES-D scores compared with 21.7% of spouses of decedents who did not use hospice (P = .06). Of those who improved, the mean (SD) change was 1.9 (1.3) points.

In multivariate analysis of propensity score–matched decedents, hospice enrollment was associated with improved spousal depressive symptoms (odds ratio [OR], 1.64; 95% CI, 1.09-2.48) (Table 4). With a hospice enrollment cutoff of at least 7 days, hospice enrollment was associated with improved spousal depressive symptoms (OR, 1.65; 95% CI, 1.02-2.65), but there was no association with a cutoff of at least 1 day of hospice use (OR, 1.31; 95% CI, 0.91-1.90).

Approximately two-thirds (65.2%) of spouses were identified as primary caregivers. Among the caregivers, 27.3% of spouses of hospice users had improved CES-D scores compared with 20.7% of spouses of decedents who did not use hospice (P = .10). In multivariate analysis, the OR for the association of hospice enrollment with improved depressive symptoms after the spouse’s death was 1.63 (95% CI, 1.00-2.65).

Based on previous studies,^27,28 we created a variable to indicate reduction in clinical depression to identify spouses whose CES-D score changed from clinically significant depression (≥3) to no depression (<3) following the decedent’s death. Clinical depression before death was identified in 30.5% of spouses of hospice users and 27.2% of spouses of individuals who did not use hospice. In multivariate models, we found no reduction in clinical depression for spouses of individuals who used hospice compared with those who did not (OR, 1.75; 95% CI, 0.94-3.23) (Table 4).

Among the 438 matched participants interviewed more than 12 months after their spouse’s death, 38.1% of the hospice group had symptom improvement compared with 26.1% of spouses of those who did not use hospice (P = .01). The likelihood of reduced depressive symptoms was greater for spouses who were exposed to hospice use compared with those who were not exposed (OR, 2.15; 95% CI, 1.10-4.21). For spouses who were primary caregivers, the comparable OR was 2.54 (95% CI, 1.09-5.94).

Using linked personal interviews and Medicare claims for married decedents in a national cohort, we found that depressive symptoms increased for most spouses after the death of their spouse. However, approximately 25% of the spouses had decreased symptoms. Specifically, surviving spouses of individuals who used hospice for at least 3 days were more likely to have some reduction in depressive symptoms after their spouses died than were surviving spouses of those who did not use hospice. This finding applied to all spouses (ie, not just those identified as primary caregivers) and was most evident at least 1 year after death.

Because HRS interviews are conducted at 2-year intervals regardless of the timing of death, we were able to assess the association between hospice use and depressive symptoms across various time periods. The relationship between hospice use and reduced depression symptoms was stronger 1 to 2 years after death, consistent with previous research.³⁶ Because grief is normal and expected the first year after the death of a spouse, we may be able to capture meaningful differences only for families of hospice users after 1 year. In addition, caregivers have not received the full amount of bereavement benefits provided to caregivers under Medicare until 1 year after death. Future evaluation of the effect of hospice use on spousal depression and other outcomes should include longer follow-up periods.

Given that hospice is an existing comprehensive care package that provides benefits to patients^22,37,38 and achieves cost savings,³² any improvements in health for spouses would be an added benefit. Because most surviving spouses, regardless of the decedent’s use of hospice, had increased depressive symptoms after death, our findings suggest that additional supports are needed if the increased depressive symptoms associated with the death of the spouse are to be substantially reduced.

We focused on the surviving spouses of patients who used hospice for at least 3 days before death. Although there is concern about whether patients receive the full benefit of hospice care when their referral is late (<7, <3, or even only 1 day before death),^21,39 our findings suggest that caregivers may nonetheless benefit from short hospice stays, perhaps because the caregiver of any hospice user is entitled to a full year of bereavement follow-up care regardless of the patient’s length of stay in hospice.

Our findings have important limitations. Because we used Medicare claims data to measure hospice use and comorbidities, we were limited to decedents with fee-for-service Medicare. Because bereavement services are bundled into hospice payments and do not generate separate claims, we were unable to determine whether and how frequently spouses used these services. A 2012 national survey of hospices,¹⁴ however, indicates that hospices almost always reach out to bereaved family members after death. Similarly, although we examined whether patients had advance directives, we did not have information on individual patient and family care preferences or on their satisfaction with the care received. In addition, although the mortality follow-back sampling method introduces potential selection bias,⁴⁰ this approach is feasible for studying end-of-life health care services. Our use of propensity score matching and multivariable regression, although robust, cannot adjust for unmeasured factors.

We were unable to determine from claims data whether there was any use of inpatient or community programs that provided palliative care services.⁴¹ Although use of such services among patients who did not use hospice would have biased our effect size to the null, research should examine the effect of the receipt of palliative care services other than hospice on caregiver depression. We only studied surviving spouses who were able to independently complete the CES-D survey; hospice may have different effects on depressive symptoms in spouses with poorer health. Further research should examine other caregiver factors that may affect depression after the patient’s death, such as the role of spousal social resources and support networks.⁴²

We focused on patients with at least 1 serious illness at the end of life. We did not consider how long each patient had been ill with any particular disease. Controlling for both the need for informal caregiving before death and reports by next of kin of the expectation of death as proxy measures of burden of illness did not change our findings (eTable in the Supplement).

It is unknown which aspect or aspects of hospice are associated with improved symptoms for spouses. High-intensity treatments, such as intensive care unit admissions, may negatively affect family members.^43-45 Next of kin report worse health when more invasive treatments are performed at the end of life²¹; such experiences are typically avoided among hospice beneficiaries. Future work should determine which components of hospice care are most beneficial for spouses. Finally, we were able to examine outcomes only among spouses. Hospice use may have beneficial effects for other family members regardless of their direct involvement in end-of-life care.

Although overall depression scores increase following death in spouses regardless of hospice use, our work suggests that hospice use is associated with a modest reduction in depressive symptoms for a subgroup of surviving spouses. Because most of these spouses are themselves Medicare beneficiaries, caring for their well-being is not only important for individual health but may also be fiscally prudent. Although there has been significant attention to the current unsustainable level of spending on health care for seriously ill persons in the United States, these analyses do not even begin to factor in the downstream effects of caregiving for a seriously ill relative on spouses and other family members. Maximizing the use of hospice for appropriate patients is a high-value intervention that can benefit both the patients and their families. Attention to the quality of caregiver support and bereavement services within hospice will be necessary to increase its benefits for families.

Accepted for Publication: February 15, 2015.

Corresponding Author: Katherine A. Ornstein, PhD, MPH, Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, One Gustave Levy Place, PO Box 1070, New York, NY 10029 (Katherine.ornstein@mssm.edu).

Published Online: May 26, 2015. doi:10.1001/jamainternmed.2015.1722.

Author Contributions: Dr Kelley had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: Ornstein, Aldridge, Meier, Kelley.

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

Drafting of the manuscript: Ornstein, Aldridge, Meier.

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

Statistical analysis: Ornstein, Aldridge, Garrido, Gorges, Kelley.

Obtained funding: Ornstein, Aldridge, Meier, Kelley.

Administrative, technical, or material support: Ornstein, Aldridge, Meier, Kelley.

Study supervision: Meier, Kelley.

Conflict of Interest Disclosures: None reported.

Funding/Support: The research was supported by National Institute on Aging grant K01AG047923 and The National Palliative Care Research Center (Dr Ornstein); National Institute on Aging grant 1K23AG040774-01A1 and the American Federation for Aging Research (Dr Kelley); and Veterans Affairs Health Services Research and Development CDA 11-201/CDP 12-255 (Dr Garrido). The Health and Retirement Study is sponsored by National Institute on Aging grant NIA U01AG009740 and is conducted by the University of Michigan.

Role of the Funder/Sponsor: The funding sources 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.

Disclaimer: The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the US government.