Palliative Care ReviewFeature Editor: Vyjeyanthi S. Periyakoil

Interventions to Improve Hospiceand Palliative Care Referral:

A Systematic Review

Irene Kirolos, MD, MPH,1 Leonardo Tamariz, MD, MPH,1,2 Elizabeth A. Schultz, MD,1

Yvonne Diaz, MD,1 Barbara A. Wood, MLIS,3 and Ana Palacio, MD, MPH1

Abstract

Background: Hospice and palliative care are underutilized among patients at the end of their lives despiteevidence that they improve patient satisfaction and reduce costs.Objective: To synthesize evidence regarding interventions to increase hospice referral/enrollment.Design and Measurements: We conducted a systematic review of the literature and selected studies thatevaluated interventions aimed at increasing hospice use. We performed a MEDLINE search (1979 to April2013) supplemented by manual searches of bibliographies of key articles. Study design, quality criteria, pop-ulation, interventions, and outcomes for each study were extracted. The main outcome evaluated was hospicereferral/enrollment.Results: Our search strategy yielded 419 studies, of which only 6 met our eligibility criteria. Three studiesincluded nursing home populations; 1 included home care patients, 1 targeted care managers, and 1 reported onheart failure patients. Three studies had a cohort design, 2 were pre–post, and only 1 was randomized. Twostudies evaluated a process to identify eligible subjects. Two evaluated the impact of advance care planningprograms and 2 only provided education. Interventions that only provided education showed a median increasein referral of 5% (2.8%–17%) while interventions that identified hospice candidates showed a median increasein hospice referral of 19.5 % (19%–20%).Conclusions: Interventions of different levels of complexity can improve the use of hospice services amongsubjects with high mortality risk. An approach that allows the medical team to assess patients’ treatment goalsand that engages the treating physician seems to be the most successful one.

Introduction

At the end of life, hospice care offers key benefitscompared to regular care. First, hospice is more likely to

fulfill patients’ needs at the physical, psychological, social,and spiritual levels.1–5 Second, hospice programs can save upto 40% of health care costs during the last month of life, or anaverage of $2,309 per hospice patient.6,7 Third, hospice careincreases family and caregivers’ satisfaction and their per-ceived self-efficacy caring for their loved one.5,8–10

However, hospice care is underused or used so late in thecourse of the illness that the efficacy of the program andsatisfaction with hospice services are reduced.11 The SUP-PORT trial found that among noncancer patients who sur-

vived a hospitalization only 5.1% of those referred to hospicelived beyond the estimated 6 months while 99% of the pa-tients who died within 6 months were not enrolled in hos-pice.12 These findings highlight the challenges we face inachieving timely identification of hospice eligible subjects.

In fact, only 20%–25% of people who die in the UnitedStates utilize hospice services and 50% of those referredspend 22 days or less in hospice care.13 Ten percent of hos-pice patients are enrolled during the last 24 hours of theirlife.14 This underutilization is likely due to misunderstandingof aspects of hospice care by both physicians and patients.15

Among physicians, referral to hospice may be perceived as aprofessional failure that can dissuade them to withdraw cu-rative attempts.16 In addition, physicians receive little

1Department of Internal Medicine, 3Department of Health Informatics, University of Miami–Miller School of Medicine, Miami, Florida.2Department of Internal Medicine, Veteran Affairs Medical Center, Miami, Florida.Accepted April 7, 2014.

JOURNAL OF PALLIATIVE MEDICINEVolume 17, Number 8, 2014ª Mary Ann Liebert, Inc.DOI: 10.1089/jpm.2013.0503

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training in the compassionate discussion of bad news15 andprognostication,12 particularly among ethnic minorities.17

In light of these data, a number of health systems andinvestigators have attempted to improve the process of hos-pice referral among the patients they serve. This study aims tosystematically review data on interventions that attempted toimprove hospice referral and enrollment and identify char-acteristics of the interventions that seem to address barriers toreferral successfully.

Methods

Search strategy

We conducted a MEDLINE database search in April 2013that was supplemented by a manual search of bibliographiesof key relevant articles that had no electronic publishedversion. Our window period was 1979 to 2013. We initiallyconducted a comprehensive search using multiple terms,which did not yield enough articles for the needed purpose,therefore, another search was done using the more generalterms: ‘‘intervention’’ and ‘‘hospice.’’ Our search termswere as follows: (‘‘Intervention’’ [Journal] OR ‘‘Interv SchClin’’[Journal] OR ‘‘intervention’’[All Fields]) AND (‘‘hos-pices’’[MeSH Terms] OR ‘‘hospices’’[All Fields] OR ‘‘hos-pice’’[All Fields] OR ‘‘hospice care’’[MeSH Terms] OR(‘‘hospice’’[All Fields] AND ‘‘care’’[All Fields]) OR ‘‘hos-pice care’’[All Fields]). We then conducted a search using allthe MESH terms present on the identified articles but noadditional articles were found. The final literature searchincluded only articles in English.

Inclusion criteria

We screened abstracts for interventions intended to im-prove hospice referral or enrollment. To be included, thestudies had to fulfill the following criteria: have a well-defined intervention, identify as outcome either hospice re-ferral or hospice enrollment, and quantitatively compare theoutcome variable between the intervention group and acontrol group, or between time periods before and after theintervention was implemented.

Data abstraction

Two investigators (I.K.) and (L.T.) completed the evidencetables. Differences between the two reviewers were resolvedby consensus among four of the investigators (I.K., L.T.,A.P., and E.S.).

Exposure variable

The key exposure variable was the intervention to improvehospice referral or enrollment.

Outcomes

Primary outcome

The primary outcome of interest was the rate of eitherhospice referral or enrollment, defined as the number of pa-tients that were either referred or enrolled in hospice duringthe evaluation period. We used the Medicare benefit def-inition of hospice, namely a program ‘‘that provides inter-disciplinary care to patients with a terminal illness and a

prognosis of < 6 months and to their families. Hospice ser-vices range from symptom management to bereavementcare.’’18 We did not include palliative care referrals in ouroutcome of interest.

Secondary outcomes

We evaluated two additional outcomes when data wereavailable for comparison: the presence of a health advancedirective and the presence of a do-not-resuscitate (DNR)order.

Qualitative evaluation

We used the Jadad et al.19 and STROBE checklists20 toassess the quality of the studies reviewed. The Jadad et al.19

checklist was used for the randomized clinical trial andevaluated items such as randomization, blinding, and drop-outs. In this checklist, a maximum score of 5 can be obtainedby a rigorous study and a study is considered low quality ifthe score is between 0–2. The STROBE checklist20 was usedfor the observational studies to assess if items that should beincluded in an observational study are present. The itemsevaluated in the article are found in the title, abstract (item 1),the introduction (items 2 and 3), methods (items 4–12), re-sults (items 13–17), discussion sections (items 18–21), andother information (item 22 on funding). We used the twenty-second item for our evaluation since we included both cohortand cross-sectional studies. We used 18 items that are com-mon to the 2 designs, while 4 (items 6, 12, 14, and 15) aredesign specific, with different versions for all or part of theitem. We assigned a score of 1 to each item if the item hadbeen met appropriately or 0 if not and then summed the in-dividual scores with a maximum possible score of 22. Twoinvestigators were responsible for completing the qualityevaluation (I.K./L.T.). Differences between the two review-ers (I.K./L.T.) were resolved by consensus that was done byI.K., L.T., A.P., and E.S.

Results

Our search strategy identified 419 articles; we excluded391 at the title and abstract level due to irrelevance to thesubject. Twenty-eight articles included a palliative care/hospice intervention, 11 of these were excluded because theydiscussed only interventions to improve quality of care and/orservices offered by hospice to their patients and caregivers.Two studies were excluded because they did not include anynumerical data for hospice referral or enrollment. Of 15 ar-ticles that included numerical data on the number of patientsreferred to and enrolled in hospice, 9 were excluded becausethe numerical data were not enough to conduct a statisticalcomparison between the groups. In conclusion only 6 studiesprovided the number of referrals before and after interventionor for the control and intervention groups. These 6 articleswere included in this study. Figure 1 depicts the inclusion andexclusion of studies.

Description of study design and populationof the included studies

Six studies met the inclusion criteria (Table 1); the studieswere published between 2005 and 2013.21–26 The median

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follow up time was 1.5 years and range from 1 to 2 years. Weidentified one randomized control trial,21 two pre–poststudies,23,26 and three retrospective cohort studies.22,24,25

Three of the six studies reported on intervention amongnursing home patients.21,23,25 The other three reported onhome care patients,24 heart failure patients,22 and Medicaidcare managers.26 All studies evaluated a total of 3559 pa-tients. The mean ages of participants ranged from 65 to 86years old. The number of females exceeded the number ofmales in almost all studies except in one study in which thenumbers were equal. The percentage of white subjects rangedfrom 63% to 87% of all included subjects.

Qualitative results

We included one randomized trial in our systematic review.The JADAD scale assigned a low quality score to the study dueto the fact that the trial was not blinded. Nevertheless, blindingin this type of intervention is probably not feasible because itwas evident to the study team where the patient was going toreceive care at the end of life. For three of the four observationalstudies the major quality concern was the lack of multivariateanalysis to adjust for important confounders like insurance andcomorbidities. Another concern was the lack of reporting onhow loss to follow-up and missing data was handled.

FIG. 1. Search strategy and choice of included studies.

Table 1. Description of the Study Design and Population

Study Study design Sample size Population Age, (patients) White Female

Casarett et al. (2005) RCT 205 Nursing home 84 yrs (mean) 74% 73%Hanson et al. (2005) Pre-/postdesign 458 Nursing home 82 yrs (mean) 74% 81%Ciemins et al. 2006 Retrospective

Cohort435 Home care 17% < 65 yrs

20% 65–75 yrs30% 76–85 yrs31% > 85yrs

63% 58%

Levy et al. 2008 Retrospectivecohort

72 Nursing home 86yrs (mean) 84% 57%

Schellinger et al. 2011 Cohort 1894 Heart failurepatients

20% < 65 yrs78% ‡ 65 yrs

87% 50%

Beyea et al. 2013 Pre–post 495 Care managers N/A N/A N/A

RCT, randomized controlled trial.

INTERVENTIONS TO IMPROVE HOSPICE REFERRAL 959

Table 2. Description of Interventions

Study Study design Description

Casarett et al. (2005) RCT Survey to identify hospice candidates and provide information tophysicians.Simple strategy to elicit via survey (the survey was done by theresearch assistants) the appropriateness of hospice without usingprognosis but rather the course of care desired as guiding principle foridentification of potentially eligible subjects.Physicians received screening results and, if applicable, ordered ahospice or palliative care consultation. The palliative care teamevaluated the patients and arranged hospice referral for those patientswho were thought to have a prognosis of a 6 months or less. Nursinghome physicians could make direct hospice referrals.

Hanson et al. (2005) Pre-/postdesignwith controlgroup

Development of palliative care teams within nursing homes.Seven nursing homes developed interdisciplinary teams (the teams areconsisted of: directors of nursing, nurses, social workers,administrators, and coordinators) that received from hospice providersonsite monthly educational sessions that used a structured curriculum.The teams also held mentored monthly strategy meetings to reviewend of life procedures and develop action plans The interventionincluded feedback on quality metrics such as hospice referral, painmanagement, advance care planning. Two random nursing homeswere selected as a control group.

Ciemins et al. (2006) Retrospectivecohort with asymptoms/prognosismatched control

Advanced Illness Management Program,A home based palliative care program established as a bridge betweencurative and comfort care for chronically ill patients discharged tohome care. Staff (case managers, and nurses) was trained on advancedcare planning and end of life issues. They worked with patients andcaregivers to meet needs and wishes.

Levy et al. (2008) Retrospectivecohort with asymptoms/prognosismatched control

Advanced Illness Management Program.A home-based palliative care program established as a bridge betweencurative and comfort care for chronically ill patients discharged tohome care. Staff (case managers, administrators, coordinators, socialworkers, and nurses) was trained on advance care planning and end-of-life issues. They worked with patients and caregivers to meet needsand wishes.

Schellingeret al. (2011)

Cohort Interview with patients, results of interview placed inthe electronic medical record (EMR).The intervention included the process of referral and enrollment intodisease specific advanced care planning (DS ACP). The study alsocompared the outcomes among different sources of referral. Theintervention included five steps: (1) referral to DS ACP (throughdischarge orders, direct referral from medical provider, or referralrequest sent by facilitators to primary care physicians; (2) referralcoordinators explained to patients the ACP process and scheduled avisit with program facilitators (registered nurses, and social workers);(3) Facilitators and patients discuss end-of-life wishes; (4) facilitatorsinclude needs and wishes in the EMR; and (5) the facilitators follow-up with the patients’ providers.

Beyea et al. (2013) Pre–post Training of Medicaid case managers of primary care network.Educational sessions (done by primary care experts) including ACPand interactive group role play. They measured the quality ofeducational sessions by counting the numbers of ‘‘advance care’’questions asked by the trainees (care managers, nurses, and socialworkers) to the patients. Examples of these questions are: ‘‘Do youhave someone who can make health care decisions for you if youbecome unable to speak for yourself?’’ and ‘‘Have you put youropinion in writing?’’ The number of these questions were counted andcompared before and after the intervention implementation.Participating care managers also completed an evaluation survey.

RCT, randomized controlled trial.

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Description of the intervention

All interventions attempted to facilitate the process ofhospice referral; however the actual interventions variedslightly from study to study (Table 2). All six interventionsimplemented staff training of end-of-life care issues. Two ofthese interventions added a process by which physicians in-teracted with staff to facilitate the identification of eligiblesubjects.21,25 Two evaluated the impact of advance careplanning programs on hospice referral or enrollment22,24 andtwo studies focused on quality improvement by providingeducational sessions to the nurses staff/case managers.23,26

The education process was focused on advanced care plan-ning, goal clarification, education on the disease and symp-toms management. Hospice providers and palliative careexperts such as physicians, nurses, social workers, andphysical therapists conducted most of the educational ses-sions.23,24,26 In more detail, in Casarett et al. 21 and Levy et al. 25

the intervention attempted to help physicians identify pa-tients in need of hospice care through either patient inter-views or the use of a mortality prediction tool.

Schellinger et al.22 evaluated the impact that a disease-specific advance care planning had on hospice referral orenrollment among congestive heart failure patients.

Similarly Ciemins et al.24 evaluated the impact of Ad-vanced Illness Management (AIM), a home-based programestablished to ease the transition between curative andcomfort care for seriously ill patients. Ciemins et al.24 com-pared hospice enrollment among AIM subjects and thosewith similar symptom burden and prognosis receiving regularhome health services.

Two of the interventions,23,26 evaluated the impact ofquality improvement programs that focused on the appro-priate training of nursing staff or the care managers. In Beyeaet al.26 the intervention targeted Medicaid case managers

from a primary care network. In Hanson et al.,23 participatingnursing homes developed palliative care teams that receivedmonthly onsite educational sessions and strategy meetingsaimed at improving end-of-life care. Table 2, has detaileddescriptions for all interventions.

Primary outcome: rate of referral to hospice

Five studies showed a statistically significant increase inhospice referral (Fig. 2). The increase in referral rates rangedfrom 2.8% to 20%. Interventions that focused on education ofpersonnel23,24,26 in contact with patients eligible for hospicecare showed a median increase in referral of 5% (range,2.8%–17%). Interventions that tested processes of identify-ing hospice candidates21,22,25 showed a median increase inhospice referral of 19.5% (range, 19%– 20%)21,22 with theexception of the study by Levy et al.,25 which showed noincrease in the rate of hospice referral. However, Levy et al.25

did show an increase in palliative care referrals of 23.7%.Ciemins et al.24 offered stratified analyses by race and

showed significantly higher impact among African Ameri-cans. The absolute differences in percent of patients referredto hospice in the entire cohort ranged from 13% when AIMwas compared to within branch controls and 31.4% whencompared to external branch controls. Among AfricanAmericans these absolute differences were 28% and 34.5%,respectively.24

Secondary outcomes

Presence of health directives was measured in two studies:Schellinger and colleagues22 and Levy and colleagues.25 Inboth studies, a statistically significant increase in the numberof patients with a documented advance directive was ob-served after the intervention. According to Schellinger

FIG. 2. Rates of referral to hospice care in included studies.

INTERVENTIONS TO IMPROVE HOSPICE REFERRAL 961

et al.,22 94% of intervention patients had an advance healthdirective; compared to 24% in the control group ( p <0.001).22 Similarly in Levy et al.,25 before the intervention,88% of residents had advance directives; this percentagehad increased to 100% after the intervention was im-plemented ( p = 0.03). The presence of a DNR order was re-ported by two of the studies.23,25 According to Hansonet al.,23 the use of DNR orders increased from (58% to 65%,p = 0.04). In Levy et al.,25 the presence of a DNR order in-creased by 20% after program implementation (63% versus84%, p = 0.003).

Discussion

Our study found that only six studies objectively evaluatedthe impact of interventions on hospice use. Five of the sixstudies were successful in increasing hospice referral or en-rollment and two successfully increased the presence of ad-vanced directives in the medical record. These studies usedtwo distinct strategies: identification of appropriate hospicecandidates and a process of referral that was feasible in thecontext of each health system. All of the successful inter-ventions seemed to focus initially on creating opportunitiesor processes to identify patients with needs and goals of carecompatible with hospice care rather than to identify subjectswith a prognosis of less than 6 months of life. Moreover, theonly study that used a mortality prediction tool as the initialidentification step failed to show an increase in hospice re-ferral although it showed an increase on palliative care re-ferral. Addressing the patients’ needs in the last 6 months oftheir lives has become a major concern in the medical field.27

This has prompted a variety of strategies to improve end-of-life care. In this review, we found that the three studiesthat involved the patients’ physicians in the process of re-ferral to either hospice or to palliative care,21,22,25 had higherrates of referral compared to the studies that only used edu-cation of staff members as the main strategy to increase re-ferral.23,24,26 A clinically relevant improvement in hospicereferral requires the presence of clear processes of care thatcreate time and space to discuss end of life options withpatients. These results suggest that better prognosticationalthough an important factor for timely participation in hos-pice, it may not be easily modifiable whereas a process toidentify subjects with needs and goals that could be filled byhospice care can facilitate a transition from curative to pal-liative care. Casarett et al.,21 demonstrated that a very briefquestionnaire to patients to identify appropriateness of hos-pice without taking into account the prognosis, was a suc-cessful initial strategy to trigger the hospice referral process.All the other studies that showed increased hospice use hadprocesses that focused on hospice awareness, goal clarifica-tion, symptom control, quality of life, and care as the initialstrategy and prognostication was done only after subjectswere already considered palliative care/home care candi-dates. In fact Ciemins et al.25 used a very broad and non-specific question such as ‘‘Would you be surprised if thispatient died within 6–12 months’’ as a mechanism to identifysubjects, rather than requesting an accurate survival estima-tion. Interestingly, the only study that used objective prog-nostication as the initial step, also offered physicians theoption of referring to either palliative care or hospice care (ifsurvival was estimated to be less than 6 months). This study

showed an increase in palliative care referrals but a smalldecrease in hospice care referrals. The tendency of providersto overestimate survival,28 may have encouraged physiciansto refer preferentially to palliative care instead of hospicecare when given the option. Alternatively, not knowing thepatients’ preferences and goals may bias physicians towarda less drastic approach. In this sense, the results by Levyet al.25 allow us to reflect on the fact that prognosticationtools are better used after patients’ needs and goals have beenaddressed.

A concern regarding the data in the studies included wasthe limited representation of minority populations.29–31 It isknown that African American and Hispanics are less likely touse hospice services at the end of their lives.31 Possiblebarriers to hospice referral in African American populationsinclude lack of awareness, misconceptions regarding hospicebeing associated with withdrawal of all treatments, mis-trust,32 or a preference for the use of life-prolonging treat-ment, despite the presence of a poor prognosis33 This may beconsidered a sign of respect for their loved ones. In addition,the lack of racial diversity among hospice staff representsanother barrier for referral of minority populations.33 Thissystematic review showed that even though most patientsincluded were white, the impact of the intervention may bedifferentially higher among African American patients.24

This demonstrates that advanced care planning interventionscould benefit populations that are otherwise disenfranchisedfrom the regular process of referral. This may be due to thefact that the AIM intervention was designed to address bar-riers rather than just identify subjects with poor prognosis.24

Therefore, having teams with the necessary training to ad-dress a variety of multidimensional needs may be an im-portant strategy to close a disparity gap in end-of-life care.One of the main limitations encountered in this systematicreview is the small number of studies identified in the liter-ature evaluating hospice referral or enrollment rates. Thesecond limitation is the heterogeneity of the data available inthe 6 studies which did not allow for calculating a summarystatistic or for reporting in detail the components of eachintervention.

The increase in hospice or palliative care referral shown inthese studies seems to be due to two main reasons. First, allsix studies created awareness regarding Hospice services andend-of-life care through structured training of health carepersonnel and developed a process to initiate a discussionregarding wishes, preferences, and goals of care.21–26 Sec-ond, those studies with the highest impact created a strategyto engage the patient’s physician in the referral process or toconnect him/her with the palliative care team.21,22,25

Health systems interested in improving the use of hospice/palliative care services should consider a wider involvementof palliative care teams with different departments withinhospitals or nursing homes. Such an involvement could beaccomplished through the creation of automatic processes toaddress patients’ preferences or for consultation to the pal-liative team based on meeting predefined eligibility criteriasuch as having an end-stage condition and having goals ofcare that may be compatible with hospice care. Relying onreceiving a prognosis of 6 months or less of remaining lifefrom physicians as a trigger for hospice consultation maynot be successful at increasing the number of referrals orthe number of subjects interested in hospice care. Further

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clinician education on how to help patients and their families’transition from curative to palliative care is needed.

Conclusion

Hospice care referral can be significantly increased evenamong minorities by establishing clear processes of screen-ing and identification that are sustainable within each specifichealth system and that focus primarily on identifying subjectswith goals and preferences aligned with hospice care. Inter-disciplinary collaborative work between all stakeholdersshould occur to develop feasible interventions that are likelyto be successful.

Author Disclosure Statement

No competing financial interests exist.

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Address correspondence to:Irene Kirolos, MD, MPH

Department of Internal MedicineUniversity of Miami–Miller School of Medicine

Clinical Research Building, 9th Floor 967f1120 NW 14th Street

Miami, FL 33136

E-mail: i.kirolos@med.miami.edu

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