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CLINICAL INVESTIGATION

Quality of Hospice Care at Home Versus in an Assisted Living Facility or Nursing Home

Kathleen T. Unroe, MD, MHA,*†‡ Timothy E. Stump, MA,§ Shannon Effler, MSW,*†

Wanzhu Tu, PhD,*†‡§ and Christopher M. Callahan, MD*†‡

OBJECTIVES: To describe differences in perceived quality of hospice care for individuals living at home or in a nurs- ing home (NH) or assisted living facility (ALF) through analysis of after-death surveys of family members.

DESIGN: Retrospective cohort study using hospice medi- cal record data and Family Evaluation of Hospice Care (FEHC) survey data.

SETTING: Large, national hospice provider.

PARTICIPANTS: Individuals who died while receiving routine hospice care and family caregivers who completed after-death quality-of-care surveys.

MEASUREMENTS: Survey results for 7,510 individuals were analyzed using analysis of variance and chi-square tests. Logistic regression was used to assess relationship between location of care and overall service quality.

RESULTS: The overall survey response rate was 27%; 34.5% of families of individuals in ALFs in hospice, 27.4% of those at home, and 22.9% of those in NHs returned the survey (P < .001). Differences in return rate according to primary diagnosis were significant, although differences were not large. Most (84.3%) respondents reported that hospice referral had occurred at the right time, and 63.4% rated service quality as excellent. Hospice care in the NH was less likely to be perceived as excellent.

CONCLUSION: There were significant differences in characteristics of individuals whose family members did and did not return surveys, which has implications for use of after-death surveys to evaluate hospice quality. Lower perceived quality of hospice care in NHs may be related to general dissatisfaction with receiving care in this setting. Survey results have the potential to set priorities for qual- ity improvement, choice of provider, and potentially reim- bursement. Underlying causes of differences of perceived

quality in different settings of care should be examined. J Am Geriatr Soc 2018.

Key words: hospice; quality; nursing home; assisted living facility

The use of hospice has expanded rapidly in recent dec-ades, with almost 48% of Medicare decedents receiv- ing hospice care in 2014.1 Variations in delivery of hospice to individuals with different diagnoses and in different settings have led to concerns about quality of care.2–6 The Affordable Care Act required the Centers for Medicare and Medicaid Services to develop a plan to pub- licly report quality data for hospices using standardized measures across settings.7 Medicare now mandates that hospices send Consumer Assessment of Healthcare Provi- ders and Systems (CAHPS) surveys to family members of decedents to rate the quality of care that hospice provided;8 these after-death surveys of family members will be publicly reported starting in winter 20189 as part of the Medicare Hospice Compare website.

Surveys of family members of decedents have been the most common approach to measuring quality of hospice care. Before its replacement with the Medicare-mandated CAHPS survey, the Family Evaluation of Hospice Care (FEHC) survey was the most commonly used instru- ment.10,11 From 2009 to 2014, more than 4 million FEHC surveys were distributed to families. An average of 1,469 hospices participated each year, with an average annual response rate of 35.1% (National Hospice and Palliative Care Organization (NHPCO) staff, personal communica- tion, January 2017). Low response rate, particularly for some populations, and other limitations of the FEHC sur- vey are relevant to consumers as use of postdeath surveys and public reporting expands. Hospices have used the results of the FEHC surveys for internal quality improve- ment, and research studies examining results of the FEHC have compared differences in reported caregiver satisfac- tion of individuals in hospice with different diagnoses; for

From the *Center for Aging Research, Indiana University; †Regenstrief Institute, Inc.; ‡Department of Medicine; and §Department of Biostatistics, School of Medicine, Indiana University, Indianapolis, Indiana.

Address correspondence to Kathleen T. Unroe, Indiana University Center for Aging Research, 1101 West 10th Street, Indianapolis, IN 46202. E-mail: [email protected]

DOI: 10.1111/jgs.15260

JAGS 2018

© 2018, Copyright the Authors Journal compilation © 2018, The American Geriatrics Society 0002-8614/18/$15.00

example, individuals with heart failure are compared with those with cancer.12,13 Although diagnosis alone did not seem to make a difference in caregiver satisfaction, the nursing home (NH) setting was associated with lower sat- isfaction for individuals with heart failure and cancer.13

Similar studies evaluated family member satisfaction based on characteristics such as race and ethnicity. Family mem- bers of African-American and Hispanic individuals in hos- pice reported more concerns about quality of care in the areas of care coordination, honoring individual’s wishes, and emotional and spiritual forms of support.14,15

Other studies have explored differences in clinical characteristics of individuals in hospice in different settings of hospice care,13–18 but we found limited prior research examining perceived quality of hospice care across settings. In field-testing of the hospice CAHPS survey, reported experiences of care were typically worse in NH than home settings.19 The author theorized that such differences may be associated with different visit patterns in NHs. Our pre- vious work explored differences in the mix of services pro- vided to individuals in hospice in NHs and assisted living facilities (ALFs) and at home.20 Understanding differences in quality of care across settings has implications for ongo- ing policy discussions regarding reform of the hospice ben- efit and, specifically, how it might be structured or reimbursed based on setting of care. Understanding these differences might also help individuals and families better interpret publicly reported data.

In this article, we compare perceptions of hospice quality across settings of care using the FEHC survey for 7,510 individuals in hospice from a large, national hospice provider. Unlike previous studies that have examined FEHC results, we also present data describing the charac- teristics of individuals for whom families did not complete after-death surveys, as well as those whose families did. Furthermore, this is the first study to directly compare per- ceptions of quality of routine hospice care for individuals in three settings of care—home, NHs, and ALFs.

METHODS

The Indiana University, Purdue University-Indianapolis institutional review board approved this study.

Sample

We obtained electronic medical record data from a national, for-profit provider of hospice services operating multiple programs in 18 states. There were 69,363 individ- uals aged 18 and older who were enrolled in hospice between January 1, 2009, and December 31, 2014 (72,839 hospice admissions). We chose to focus only on each indi- vidual’s last hospice admission (N = 69,363) if they had multiple stays during this time frame. We first selected 32,679 individuals receiving routine hospice care (47%). Individuals receiving continuous or higher level of care or respite level of care or those receiving care at an inpatient hospice or hospital setting were excluded (N = 36,684). The distribution of these excluded individuals included 6,212 continuous care (16.9%), 25,422 inpatient (69.3%), 677 respite (1.9%), 2,198 mixture of preceding three cate- gories (6%), and 2,175 status undetermined (5.9%). Three

sites of care were of interest: home, NH (skilled, non- skilled, long-term nursing facilities), and ALF. We nar- rowed the sample to include individuals having at least 95% of their hospice days at only one of these sites (N = 32,605). Furthermore, the individual had to have died to have a FEHC survey administered to the family (N = 27,714); 7,510 (27%) had a completed FEHC survey that a family member returned, which served as the denominator for the analysis of survey results, 3,664 of whom received hospice services at home (49%), 2,195 in a NH (29%), and 1,651 in an ALF (22%).

Survey

The FEHC survey contains approximately 60 questions separated into 5 domains: attending to family needs for support, attending to family needs for information, coordi- nation of care, providing symptom management and emo- tional support, and overall satisfaction. Overall perception of quality is assessed as the response to the question “Overall, how would you rate the care the individual received while under the care of hospice?” Possible responses are excellent, very good, good, fair, and poor. A full description of the survey design has been previously published.21 Combining scores on 17 variables from the above domains, we also calculated the National Quality Forum composite score, which measures overall hospice service quality. Scoring rules were obtained from NHPCO.22 Variables from the survey were recoded into problem scores or indicators (1 = worst possible response vs 0 = otherwise). Missing values were recoded to 0 for up to 3 responses. If a caregiver had more than 3 missing responses, a composite score was not calculated. Compos- ite scores ranged from 0 to 100, with 100 indicating the best possible hospice service quality.

The FEHC was distributed through a third-party ven- dor and mailed to caregivers 6 weeks after the individual’s death. Recipients can respond electronically or through the mail; a preprinted envelope is provided for return. The vendor collected the responses and returned the data to the hospice in categorical summaries along with narrative comments. “Excellent” overall care quality was a metric the hospice organization closely tracked.

Analysis

Demographic and hospice use characteristics and care location (home, NH, ALF) were described according to survey response status (returned and completed, yes vs no). Continuous characteristics were compared using analysis of variance (ANOVA) and categorical character- istics using chi-square tests. Comparisons were made first between responders and non-responders and then across care locations (home, NH, ALF). For location of care, an overall omnibus chi-square test was used to assess overall difference across all 3 sites. We then performed all pair- wise comparisons using chi-square tests to evaluate the differences between home and NH, home and ALF, and NH and ALF. We reported the content of the survey according to care location. The overall service quality assessment and a composite score of the three care loca- tions were compared using chi-square and ANOVA tests.

2 UNROE ET AL. 2018 JAGS

Individual survey items were compared similarly, as described above. To control for the inflation of the over- all Type I error rate from multiple comparisons, we used reported P-values adjusted using the false discovery rate method.23 Adjusted P-values less than .001 were consid- ered statistically significant. Logistic regression was used to assess the relationship between location of care and overall service quality, controlling for potential confound- ing factors. Covariates included participant age, hospice length of stay, sex, race, marital status, primary hospice diagnosis, region, and relationship between caregiver and participant. Odds ratios (ORs) with P < .001 were con- sidered statistically significant. All statistical analyses were performed using SAS software for Windows (SAS Insti- tute, Inc., Cary, NC).

RESULTS

Surveys were returned for 7,510 of the 27,714 decedents who received routine hospice care (27%) (Table 1). There were significant differences in the characteristics of partici- pants whose family members did and did not return sur- veys; surveys were returned for 34.5% of participants receiving care in an ALF, 27.4% of those receiving care at home, and 22.9% of those in a NH (P < .001). Partici- pants with long stays (>6 months) accounted for 8.8% of the total sample but 11% of the returned surveys. Fewer surveys were returned for nonwhite individuals; 9.3% of returned surveys reported on care for black individuals, even though black individuals represented 15.2% of the population (P < .001).

Table 1. Participant Demographic Characteristics According to Family Evaluation of Hospice Care (FEHC) Survey Status (N = 27,714 Individuals Receiving Routine Hospice Care Between 2009 and 2014 Whose Hospice Discharge Status Was Death)

Characteristic Overall, N = 27,714

FEHC Survey Status

Survey Not Present,

n = 20,204 Survey Present,

n = 7,510 P-Valuea

Age, mean � SD, median (range) 80.1 � 13.1, 83 (19–110) 79.5 � 13.4, 83 (19–110) 82.0 � 12.0, 85 (19–108) <.001 Length of hospice episode, days, mean � SD, median (range)

59.7 � 116.8, 17 (1–2,117) 56.1 � 111.6, 16 (1–2,117) 69.3 � 129.1, 20 (1–1,615) <.001

Length of hospice episode, days, n (%) 1–6 6,972 (25.2) 5,380 (26.6) 1,592 (21.2) <.001 7–14 5,689 (20.5) 4,195 (20.8) 1,494 (19.9)

15–30 4,905 (17.7) 3,567 (17.7) 1,338 (17.8) 31–60 3,738 (13.5) 2,621 (13.0) 1,117 (14.9) 61–90 1,679 (6.1) 1,186 (5.9) 493 (6.6) 91–180 2,281 (8.2) 1,629 (8.1) 652 (8.7) >180 2,450 (8.8) 1,626 (8.1) 824 (11.0)

Male, n (%) 10,996 (39.7) 8,075 (40.0) 2,921 (38.9) .10 Race, n (%) White 21,169 (76.4) 14,713 (72.8) 6,456 (86.0) <.001 Black 4,222 (15.2) 3,525 (17.5) 697 (9.3) Asian 538 (1.9) 447 (2.2) 91 (1.2) Hispanic 1,191 (4.3) 1051 (5.2) 140 (1.9) Other 594 (2.1) 468 (2.3) 126 (1.7)

Married, n (%) 8,416 (30.4) 5,767 (28.5) 2,649 (35.3) <.001 Primary hospice diagnosis, n (%) Cancer 9,534 (34.4) 7,139 (35.3) 2,395 (31.9) <.001 Dementia 5,702 (20.6) 4,027 (19.9) 1,675 (22.3) Cardiovascular disease 3,064 (11.1) 2,203 (10.9) 861 (11.5) Cerebrovascular disease 2,403 (8.7) 1,796 (8.9) 607 (8.1) Pulmonary disease 1,558 (5.6) 1,132 (5.6) 426 (5.7) Debility 2,202 (8.0) 1,488 (7.4) 715 (9.5) End-stage renal disease 692 (2.5) 542 (2.7) 150 (2.0) Other 2,559 (9.2) 1,877 (9.3) 682 (9.1)

Hospice region, n (%) Northeast 3,208 (11.6) 2,254 (11.2) 954 (12.7) <.001 Midwest 12,834 (46.3) 9,055 (44.8) 3,779 (50.3) South 9,041 (32.6) 6,835 (33.8) 2,206 (29.4) West 2,631 (9.5) 2,060 (10.2) 571 (7.6)

Location, n (%) Home 13,352 (48.2) 9,688 (48.0) 3,664 (48.8) <.001 Nursing home 9,578 (34.6) 7,383 (36.5) 2,195 (29.2) Assisted living facility 4,784 (17.3) 3,133 (15.5) 1,651 (22.0)

aChi-square test used for categorical variables and analysis of variance for continuous variables; P-values adjusted for multiple testing using false discovery

rate method.

SD = standard deviation.

JAGS 2018 HOSPICE QUALITY OF CARE 3

Survey respondents were more likely to be female and white (Table 2). There were some significant variations between respondents based on setting of care. A majority of respondents were children of NH (58.6%) and ALF (66.8%) residents, whereas 42.6% of respondents for par- ticipants at home were partners or spouses.

Most (84.3%) respondents reported that hospice refer- ral had occurred at the right time. Only 1.4% of respon- dents felt that hospice referral had been too early and 9% that it was too late. Respondents for NH residents were more likely not to answer this question and less likely than those for ALF residents or individuals at home to report that the timing had been right (79.1%) (P < .001).

There were no differences in composite National Quality Forum quality scores between the three sites of hospice care (P = .49) (Supplemental Table S3). Several differences between the sites of care, including in rating of overall care quality, were seen on individual questions. Nearly 90% of all respondents rated hospice care as excel- lent or very good. For individuals in hospice, 67.8% of family members of those who received care at home reported that hospice care was excellent, versus 64.3% of ALF and 55.1% of NH residents (P < .001). The correla- tion between the composite quality score and the 5-cate- gory measure of overall service quality was 0.65.

Families also answered questions about communica- tion with hospice providers, including whether they received relevant clinical information about the individual’ care. Families of NH residents were more likely than those of individuals at home or in ALFs to report that they did not receive information on pain medications used or treat- ments for breathing problems (P < .001). Families also reported whether they had wanted more information (P = .006); differences between sites in desire for more information were not statistically significant (P = .06). It is likely that this reflects the larger role of formal direct care- givers, rather than family caregivers, in NHs. In the home setting, family caregivers are more likely to have a hands- on role in providing care and may thus have more direct interaction with hospice providers than in settings where more-formal care is provided. Family caregivers of individ- uals who died at home were more likely to report that they were not confident in doing what was needed to care for the person—27.9%, versus 16% for ALF residents and 12.4% for NH residents (P < .001). Family members of NH residents were less likely to feel that death occurred in the setting of the individual’s choice—81.7%, versus 93.5% for ALF residents and 98.8% for individuals at home (P < .001) (full survey results in Supplemental Table S2).

Table 2. Caregiver Characteristics According to Location (N = 7,510)

Characteristic

Overall,

N = 7,510

Location Omnibus

Test

Home vs

NH

Home vs

ALF

NH vs

ALF

Home,

n = 3,664 NH,

n = 2,195 ALF,

n = 1,651 P-Value a

n (%)

Sex Male 1,490 (19.8) 659 (18.0) 454 (20.7) 377 (22.8) <.001 .04 <.001 .001 Female 3,881 (51.7) 1,894 (51.7) 1,104 (50.3) 883 (53.5) Information not provided 2,139 (28.5) 1,111 (30.3) 637 (29.0) 391 (23.7)

Race White 4,719 (62.8) 2,164 (59.1) 1,340 (61.0) 1,215 (73.6) <.001 .18 <.001 <.001 Black 455 (6.1) 267 (7.3) 164 (7.5) 24 (1.4) Other 145 (1.9) 94 (2.6) 41 (1.9) 10 (0.6) Information not provided 2,191 (29.2) 1,139 (31.1) 650 (29.6) 402 (24.4)

Education ≤High school 1,616 (21.5) 929 (25.4) 453 (20.6) 234 (14.2) <.001 <.001 <.001 <.001 Some college 1,467 (19.5) 701 (19.1) 440 (20.0) 326 (19.7) 4-year college degree 886 (11.8) 370 (10.1) 250 (11.4) 266 (16.1) >4-year college degree 1,363 (18.2) 538 (14.7) 403 (18.4) 422 (25.6) Information not provided 2,178 (29.0) 1,126 (30.7) 649 (29.6) 403 (24.4)

Relationship to participant Partner or spouse 2,029 (27.0) 1,560 (42.6) 301 (13.7) 168 (10.2) <.001 <.001 <.001 <.001 Child 3,840 (51.1) 1,451 (39.6) 1,286 (58.6) 1,103 (66.8) Parent, sibling, other relative 1,010 (13.5) 402 (11.0) 373 (17.0) 235 (14.2) Friend, other 334 (4.4) 132 (3.6) 111 (5.1) 91 (5.5) Information not provided 297 (4.0) 119 (3.2) 124 (5.6) 54 (3.3)

Timing of hospice referral, n (%) Too late 679 (9.0) 306 (8.3) 238 (10.8) 135 (8.2) <.001 <.001 .12 <.001 Right time 6,328 (84.3) 3,176 (86.7) 1,736 (79.1) 1,416 (85.8) Too early 102 (1.4) 33 (0.9) 42 (1.9) 27 (1.6) Information not provided 401 (5.3) 149 (4.1) 179 (8.2) 73 (4.4)

aChi-square test used for categorical variables; P-values adjusted for multiple testing using false discovery rate method.

NH = nursing home; ALF = assisted living facility.

4 UNROE ET AL. 2018 JAGS

In a logistic regression model (Supplemental Table S1), family members of individuals who had received hospice care in NHs (OR = 0.48, P < .001) or ALFs (OR = 0.67, P < .001) were significantly less likely to report receiving excellent care than families of individu- als who lived at home (Supplemental Table S1). In addi- tion, family members of participants who lived in the South (OR = 0.82, P < .001) were significantly less likely than those in the Midwest to rate hospice care as excellent.

DISCUSSION

Quality measurement in hospice has been challenging and has struggled to keep pace with the rapid expansion of hospice services.23,24 Now that after-death surveys are mandatory and will be publicly reported, it is important to understand the sample of family members who respond to the survey, as well as differences in perceived quality between various subpopulations of individuals in hospice. In this analysis of 7,510 surveys of family members, over- all perceptions of the quality of care provided to their loved one were high; approximately 95% of all respon- dents felt that care was good, very good, or excellent. The experience over several years of the widely used FEHC survey is instructive for interpretation of the similar CAHPS survey. These analyses raise several points that merit further discussion, including representativeness of after-death surveys and how variations in perceived quality may reflect the overall experience of people at the end of life in these different care settings.

Although survey results provide insight into the per- spective of family members of people who have died with hospice services, a majority of families did not complete the survey. There were differences in completion rates based on length of stay; thus, the survey approach may be less helpful for measuring the quality of care for people with shorter stays. Furthermore, nonwhite families were less likely to complete the survey. This is particularly trou- bling given reported racial differences in experiences and quality of care near the end of life.25–28 Some differences in respondents for care in different settings are expected and are due to differences in participant populations; indi- viduals who are cared for in ALFs tend to be older and are more likely to have a son or daughter caregiver than a spouse caregiver. Improvements in survey data collection or analysis strategies that account for response differences could help improve the representativeness of the mandated survey results. Other strategies, beyond after-death sur- veys, may be needed to obtain the perspectives of under- represented individuals in hospice and families. Data on the family experience of hospice care should be considered alongside other measures of hospice quality to present a fuller picture.

The calculated composite score did not reveal differ- ences between settings, although some responses to indi- vidual items on the survey revealed variations in the perceptions of family members of individuals cared for in different settings. Quality of communication is a critical construct measured on the survey. Families of NH resi- dents reported receiving less information about aspects of clinical care but did not report greater dissatisfaction with

the amount of information than families of individuals in other settings. NH residents receive care from nursing aides and nurses in the facility; families may provide addi- tional support at the bedside but are not involved in dis- pensing medications or other aspects of supporting medical care that they may be at home. NH staff must work directly with hospice staff to implement plans of care. The level of access to formal caregivers provided in ALFs varies, and families may thus be more involved in direct care of individuals in that setting than in NHs. In the home setting, individuals receiving routine hospice care often rely on family caregivers, who play a more direct role in hands-on care. It is thus not surprising that family caregivers at home, who would bear primary responsibility for delivering care, may express less confi- dence in knowing what they needed to do than those who are able to rely on formal caregiving staff.

Families were less likely to rate their hospice care in the NH as excellent and more likely to report that partici- pants did not die in the setting of their choice. Concerns about quality of NH care and individuals’ unhappiness with being in that setting, which serves as a safety net for people who do not have adequate support at home, may be reflected in these responses and thus not be a true mea- sure of perceptions of the quality of hospice care provided. Also, the challenges of integrating hospice care into the NH setting have been described.29,30 Challenges with coor- dination of care plans or communication between hospice and NH staff can occur and could contribute to percep- tions of poorer quality of care. Families may struggle to distinguish between care that hospice staff and NH or ALF staff provide, which makes it difficult to measure quality of care provided in these settings.

Identifying appropriate timing for hospice referral is a challenge for clinical providers and a concern for policy- makers. ALF and NH residents are more likely to receive hospice care for longer than individuals in home settings, although most families who responded to the FEHC survey felt that hospice was provided at the right time, and few reported that hospice had become involved too early.

There were limitations to these analyses. Although this sample of individuals in hospice was large and geographi- cally diverse, it was derived from one provider whose practices may differ from other hospice providers, which may limit generalizability. Furthermore, we limited our sample to individuals who received routine hospice care and who lived in one setting near the end of life to more clearly differentiate perceived quality between individuals cared for at home than in ALFs and NHs. People who transition between care settings near the end of life may be more vulnerable to disruptions in care that affect quality.

These findings highlight considerations for policymak- ers, hospices, and individuals and their families. Medicare continues to drive toward greater transparency for con- sumers through public reporting. Survey results have the potential to set priorities for quality improvement, choice of provider, and potentially reimbursement. Survey methodology will need to take into account variations in population subgroups and response rates. Furthermore, potential underlying causes of differences in perceived quality for individuals in different settings of care should be examined. Staff generally provide daily care in NH or

JAGS 2018 HOSPICE QUALITY OF CARE 5

ALFs, which may distance family members from day-to- day treatment discussions. Hospice providers may need to customize communication strategies based on setting.

ACKNOWLEDGMENTS

Supported by the National Institute on Aging (K23AG048323) and American Federation for Aging Research.

Conflict of Interest: None to report. Author Contributions: Unroe, Callahan: Study concept

and design. Unroe, Stump: Acquisition of data. Stump, Tu: Statistical analysis. Unroe, Effler, Stump: Literature search, interpretation of data, manuscript preparation. Callahan, Tu: Consulting on results interpretation. All authors: Review and editing of manuscript.

Sponsor’s Role: None.

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SUPPORTING INFORMATION

Additional Supporting Information may be found in the online version of this article:

Table S1. Logistic Regression Model for Excellent Overall Quality*

Table S2. Full survey results by location (N = 7,510) Table S3. Survey results by location (N = 7,510) Please note: Wiley-Blackwell is not responsible for the

content, accuracy, errors, or functionality of any support- ing materials supplied by the authors. Any queries (other than missing material) should be directed to the corre- sponding author for the article.

6 UNROE ET AL. 2018 JAGS