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Hospice Enrollment After Referral to Community-Based, Specialist Palliative Care: Impact of Telephonic Outreach
Vol. 54 No. 2 August 2017
Journal of Pain and Symptom Management 219
Brief Report
Hospice Enrollment After Referral to Community-Based, Specialist Palliative Care: Impact of Telephonic Outreach Alexa Riggs, BA, Brenda Breuer, PhD, Lara Dhingra, PhD, Jack Chen, MBS, Russell K. Portenoy, MD, and Helena Knotkova, PhD MJHS Institute for Innovation in Palliative Care (A.R., B.B., L.D., J.C., R.K.P., H.K.), New York; Department of Family and Social Medicine (B.B., L.D., R.K.P., H.K.); Department of Neurology (R.K.P.), Albert Einstein College of Medicine, Bronx, New York; and MJHS Hospice and Palliative Care (R.K.P.), New York, New York, USA
Abstract Context. In the U.S., palliative care programs improve access to hospice through enhanced communication and efficiencies in hospice eligibility review and enrollment. For community-based programs, this task may begin with telephone contact. Objectives. To evaluate the incidence and predictors of hospice enrollment following telephonic outreach by a nurse after referral to a community-based, specialist palliative care program. Methods. During 2012e2014, 299 consecutive patients who were referred to a palliative care program and subsequently enrolled in hospice provided electronic health record data for a retrospective cohort study. Those who elected hospice after telephonic outreach and before the first palliative care home visit, were compared with those who enrolled in hospice after palliative care visits began, using both bivariate and multivariate analyses. Results. Mean (SD) age was 74.1 (18.7) years; 60.2% were women, 44.4% were White, 22.5% were Hispanic, 20.9% were Black, and 9.6% were Asian. In total, 177 patients (59.2%) elected hospice following telephonic outreach and 122 (40.8%) enrolled after home visits began. The former group received a mean of 4.5 calls (median ¼ 3.0) before hospice election. In multivariate analysis, hospice enrollment following telephonic outreach alone was associated with hospital or nursing home referral, not married status, and poor performance status (all P < 0.05). Conclusion. More than half of patients electing hospice after referral to a palliative care program did so following telephonic outreach alone. Both sociodemographic and clinical characteristics predicted this outcome. Palliative care programs can improve hospice access through initial telephonic outreach by trained professionals. J Pain Symptom Manage 2017;54:219e225. Ó 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, hospice, chronic illness, telephonic outreach
Introduction In the U.S., hospice is a government-supported program that provides comprehensive services for patients with advanced illness, a large proportion of whom live at home. Although the number of eligible patients who elect the hospice benefit has steadily increased for many years, the program remains
Address correspondence to: Helena Knotkova, PhD, MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, NY 10006, USA. E-mail: Hknotkov@ mjhs.org Ó 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
underutilized, both in terms of the numbers of patients served and the length of stay after enrollment.1,2 Access to hospice may be improved through the work of a palliative care consultation service. In both the hospital setting3,4 and the community setting,5,6 referral to a specialist palliative care service is associated with greater hospice enrollment and a longer hospice length of stay. This outcome presumably
Accepted for publication: March 24, 2017.
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2017.03.007
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occurs as a result of communication with experts about the hospice benefit and efficiencies in hospice eligibility review and admission. When a patient in a hospital or nursing home is referred to a palliative care specialist, the first contact usually involves a visit to the bedside. In contrast, homebound patients referred to a community-based palliative care program receive an initial home visit after one or more telephone calls. It is likely that some programs rely on non-professional staff to initiate this telephonic outreach, with the intent to confirm the patient’s interest in a home visit and schedule a time for a home visit. Other programs, however, may require initial contact with clinical staff and use this opportunity to obtain verbal consent for care, collect clinical information from the patient or family, provide information about available services, and prepare for a visit. The latter approach may provide an opportunity to assess the need for information about hospice services. If telephonic outreach can be implemented by professionals with strong communication skills and an accurate understanding of hospice eligibility, it is possible that a subset of seriously ill patients may be able to access hospice services before the first home visit by a member of the palliative care team occurs. However, this potential has not been previously described. We conducted a retrospective cohort study to assess the rate of hospice enrollment after telephonic outreach by a nurse at the time of referral to a community-based specialist palliative care program.
Methods Data were accessed from the electronic health record of MJHS Hospice and Palliative Care, a large not-for-profit hospice agency in New York City. Beginning in 2010, MJHS Hospice and Palliative Care provided a community-based, interdisciplinary, specialist palliative care program, which served a diverse patient population referred by two health plans.7 In a prior analysis,5 hospice-related outcomes were described in a cohort of patients who were managed by the palliative care team during the period 2010e2013. Herein, we analyze data from a second cohort of patients, which was referred between November 2012 and May 2014. In contrast to the earlier study, the current analysis included all patients who were referred to the program, whether or not management by the palliative care team was initiated after referral. The date range evaluated permitted a longer follow-up time to identify hospice admission. Data for the analysis were obtained in an aggregated and de-identified manner, and the study obtained an exemption from review by the New England Independent Review Board. Following referral to the palliative care program, a nurse called the patient’s home and spoke to the
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patient or the patient’s legally authorized representative. The nurses making these calls had access to limited clinical information provided at the time of the referral or obtained subsequently through contact with the patient’s primary physician. The call’s purpose was to inform the patient (or surrogate) that a referral had been made, acquire verbal consent for care, and obtain clinical information that would be useful to clarify the acuity and nature of the patient’s major problems. In most cases, the nurse who called the patient raised the possibility that hospice services may be available in the present or at a later date. This conversation certainly would be initiated if the clinical information available to the nurse at the time of the call indicated that the patient was eligible for hospice, or likely to be eligible, or if a physician’s referral specifically requested help in transitioning the patient to hospice. If the patient or surrogate expressed interest in hospice but the nurse had no specific information about hospice from the patient’s physician, the patient was given general information and told that the nurse would contact the physician to discuss the role of hospice and schedule a second call with the patient. Additional calls to the patient or surrogate also would be scheduled to ensure that all questions were answered. If these contacts culminated in the patient’s or surrogate’s request for hospice enrollment, information was provided about the availability of hospice programs serving the community, and a referral was made to the program selected by the patient. Further contact with the palliative care team was not pursued if a hospice referral was made. Patients who were ineligible for hospice, or declined further discussion about the program, were scheduled for an initial home visit with the physician or nurse practitioner from the palliative care team.7 These patients could be referred to hospice at a later date.
Data Source and Statistical Analysis The cohort for analysis was defined by: 1) referral to the palliative care program during the study period and 2) subsequent admission to the hospice program of MJHS Hospice and Palliative Care. Of the 706 patients referred to the palliative care program during the study period, a total of 299 (42.3%) consecutive patients fulfilled the cohort criteria. Data from these 299 patients were extracted from the electronic health record for this analysis. Baseline sociodemographic variables comprised age, sex, race/ethnicity (Asian, White, Black, Hispanic, other), primary language (English, Spanish, and others), referral source (hospital/nursing home, community including community health plans, and others), primary payer (Medicaid, Medicare, and commercial insurance), living status (lives alone or does not live alone), marital status (married or not married), and poverty status. Poverty status was
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Hospice Following Palliative Care Phone Services
determined from a comparison of the patients’ primary address zip codes and American Community Survey data, which designate the percentage of people in a specific zip code area living below the federal poverty level. Zip codes were categorized into quintiles (Q): Q1 included <10.0% of residents living in poverty, Q2 included 10.0%e19.9%, Q3 included 20.0% e29.9%, Q4 included 30.0%e39.9%, and Q5 included $40%. For the purpose of analysis, the likelihood that a patient lived in poverty corresponded with the ranking of their zip code’s quintile. This methodology has been used as a measure of socioeconomic status in New York City in other studies.5,7,8 Other baseline clinical variables included diagnosis and performance status. Performance status was recorded using the Karnofsky Performance Status Scale for patients with palliative care visits and as Palliative Performance Status (PPS) for those admitted to hospice after telephonic outreach alone. Both scales range from 10 to 100, and for the analysis, the scores were treated as categorical variables with either three or two categories, specifically 10e40 (Unable to care for self), 50e70 (Unable to work), and 80e90 (Able to carry on normal activities), or 10e40 and 50e90. The multivariate analysis was performed with the latter two categories because of the low count of those with scores of 80e90. Longitudinal data included the number of telephone calls, date of hospice enrollment, and length of stay in hospice. All completed calls were included in the count, including those with clinical, administrative, and scheduling purposes. SAS University Edition was used for all analyses, including descriptive statistics, and bivariate and multivariate analyses (SAS Institute, Inc., Cary, NC). Patients who were enrolled in hospice following telephonic outreach alone were compared with patients who enrolled in hospice after one or more home visits by a member of the palliative care team. Logistic regression using the PROC LOGISTIC procedure was applied to assess the predictors of hospice enrollment following telephonic outreach alone. Multiple imputation using the MIANALYZE procedure was used to address missing data by creating multiple datasets for subsequent analyses. Variables with at least 75% of data were included in the imputation process; variables living status, race/ethnicity were excluded from imputation and subsequent analysis.
Results Patient Characteristics The 299 patients who were referred to the palliative care program and subsequently enrolled in hospice had a mean SD age of 74.1, 18.7 years (Table 1).
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Table 1 Characteristics of Patients Admitted to Hospice Following Referral to a Community-Based SpecialistLevel Palliative Care Program (n ¼ 299) Characteristic
Total N
n (%) by Subgroup
Agea N (Mean, SD, min-max, median) Total study sample 298a (74.1, 18.7 1e101, 78) Age # 17 yrs 8 (4.5, 3.89, 1e10, 3.5) Age $ 18 yrs 290 (76.0, 14.8, 25e101, 79.0) Sex 299 Women 180 (60.2) Men 119 (39.8) Race/Ethnicity 187 Asian 18 (9.6) Black 39 (20.9) White 83 (44.4) Hispanic 42 (22.5) Identified as ‘‘other’’ 5 (2.7) Primary language 270 English 208 (77.0) Spanish 32 (11.9) Other 30 (11.1) Marital status 232 Not married 143 (61.6) Married 89 (38.4) Living status 151 Lives alone 23 (15.2) Does not live alone 128 (84.8) Poverty status 299 1 (<10% below poverty) 70 (23.4) 2 (10%e19.9% below 85 (28.4) poverty) 3 (20%e29.9% below 85 (28.4) poverty) 4 (30%e39.9% below 50 (16.7) poverty) 5 ($40% below poverty) 9 (3.0) Referral source 279 78 (28.0) Hospital/Nursing homeb Community 161 (57.7) Others 40 (13.4) Primary payer 246 Medicaid 9 (3.7) Medicare 114 (46.3) Commercial 123 (50.0) Disease diagnosis 278 Cancer 137 (49.3) Neurodegenerative disease 31 (11.2) COPD 15 (5.4) CHF/Cardiac 37 (13.3) Chronic renal failure 5 (1.8) Cirrhosis 6 (2.2) Other 47 (16.9) 248 Performance status (KPS/PPS)c 10e40 (Unable to care for 166 (66.9) self) 50e70 (Unable to work) 78 (31.5) 80e90 (Able to carry on 4 (1.6) normal activities) SD ¼ standard deviation; COPD ¼ chronic obstructive pulmonary disease; CHF ¼ congestive heart failure; KPS ¼ Karnofsky Performance Status Scale; PPS ¼ Palliative Performance Status. In computation of percentages, missing data were excluded. a Data missing for one patient. b Patients were referred to palliative care from an institution such as a hospital or nursing home, but were not residing there. c Performance Status was measured using KPS scores for patients with visits and PPS scores for those admitted to hospice after the telephonic outreach alone.
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Fig. 1. Call data from patients who enrolled in hospice after telephonic outreach alone. Of the 177 patients, call data were available from 132 patients. (a) The number of telephone calls per patient. (b) The distribution of days during which patients received telephone calls. The median is displayed as the horizontal line in the middle of the box, and the x indicates the mean. The outer edges of the box show the 25th and 75th percentiles. The outer bars show the fifth and 95th percentiles; and individual data points are displayed outside of the 95th percentile.
Most spoke English (n ¼ 208, 77.0%) and more than half were women (n ¼ 180, 60.2%). Although most were not married (n ¼ 143, 61.6%), over 80% lived with someone else (n ¼ 128, 84.8%). Race/ethnicity were diverse; 83 (44.4%) were White, 42 (22.5%) were Hispanic, 39 (20.9%) were Black, 18 (9.6%) were Asian, and five (2.7%) were identified as ‘‘other.’’ Almost half of the patients resided in neighborhoods where 20% or more of residents had an income below the federal poverty level (n ¼ 144, 48.1%). Referrals to the palliative care program originated from community-based providers (n ¼ 161, 57.7%), from hospitals or nursing homes (n ¼ 78, 28.0%), or from other sources (n ¼ 40, 13.4%). All patients were chronically ill and the primary diagnoses were cancer (n ¼ 137, 49.3%), neurodegenerative disease (n ¼ 31, 11.2%), chronic obstructive pulmonary disease (n ¼ 15, 5.4%), cardiac diseases (n ¼ 37, 13.3%), chronic kidney disease (n ¼ 5, 1.8%), cirrhosis (n ¼ 6, 2.2%), or other disorders (n ¼ 47, 16.9%). Two-thirds of patients (n ¼ 166, 66.9%) had a
performance status score between 10 and 40 and were unable to provide self-care.
Hospice Enrollment As noted, the 299 patients who enrolled in hospice represented 42.3% of the 706 patients referred to the palliative care program during the study period. A total of 177 of these 299 patients (59.2%) elected hospice following telephone contact and before a home visit was completed by any member of the palliative care team. The remaining 122 patients (40.8%) enrolled in hospice after receiving at least one palliative care home visit. Of the 177 patients who enrolled in hospice after telephonic outreach alone, call data were available from 132 patients (Figs. 1a and 1b), and hospice length of stay was available for 149 patients. Hospice enrollment occurred after a mean of 4.5 calls (median ¼ 3.0) and the calls that occurred before hospice enrollment took place over a mean of 14 days (median ¼ 10.0 days); 50.0% of patients
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Table 2 Bivariate Analysis of Characteristic Comparisons Between Patients Who Enrolled in Hospice After Telephonic Outreach Alone (n ¼ 177) and Those With Full Admission to Palliative Care Including At Least One Visit by the Palliative Care Personnel (n ¼ 122) Characteristic Age N (mean SD) Sex Women Men Race/Ethnicity Asian Black White Hispanic Identified as ‘‘other’’ Primary language English Spanish Other Marital status Not married Married Living status Lives alone Does not live alone Poverty status 1 (#10% below poverty) 2 (10%e19.9% below poverty) 3 (20%e29.9% below poverty) 4 (30%e39.9% below poverty) 5 ($40% below poverty) Disease diagnosis Cancer Neurodegenerative disease COPD CHF/Cardiac Chronic renal failure Cirrhosis Other Referral source Hospital/Nursing homeb Community Others Primary payer Medicaid Medicare Commercial Performance status (KPS/PPS)c 10e40 (Unable to care for self) 50e70 (Unable to work) 80e90 (Able to carry on normal activities) a
Hospice After Palliative Care Phone Referral (n ¼ 177)
Hospice After Palliative Care Full Admission (n ¼ 122)
176 (74.4 17.2)
122 (73.6 20.6)
102 (57.6) 75 (42.4) 14 18 46 20 2
(14.0) (18.0) (46.0) (20.0) (2.0)
78 (63.9) 44 (36.1) 4 21 37 22 3
(4.6) (24.1) (42.5) (25.3) (3.4)
P-value 0.688 0.273
0.186
124 (77.5) 15 (9.4) 21 (13.1)
84 (76.4) 17 (15.5) 9 (8.2)
0.176
77 (55.4) 62 (44.6)
66 (71.0) 27 (29.0)
0.017
6 (8.6) 64 (91.4)
17 (21.0) 64 (79.0)
0.034
36 52 56 28 5
(20.3) (29.4) (31.6) (15.8) (2.8)
34 33 29 22 4
(27.9) (27.0) (23.8) (18.0) (3.3)
0.445
85 15 6 16 5 3 29
(53.5) (9.4) (3.8) (10.1) (3.1) (1.9) (18.2)
52 16 11 23 0 3 21
(43.7) (13.4) (7.6) (17.6) (0.0) (2.5) (15.1)
0.079
56 (33.9) 88 (53.3) 21 (12.7)
22 (19.3) 73 (64.0) 19 (16.7)
0.027
1 (.8) 67 (54.0) 56 (45.2)
8 (6.6) 47 (38.5) 67 (54.9)
0.007
109 (78.99) 29 (21.01) 0 (0.0)
57 (51.82) 49 (44.55) 4 (3.64)
<0.001
SD ¼ standard deviation; COPD ¼ chronic obstructive pulmonary disease; CHF ¼ congestive heart failure; KPS ¼ Karnofsky Performance Status Scale; PPS ¼ Palliative Performance Status. In computation of percentages, missing data were excluded. a Data missing for one patient. b Patients were referred to palliative care from an institution such as a hospital or nursing home, but were not residing there. c Performance Status was measured using KPS scores for patients with visits and as PPS scores for those admitted to hospice after telephonic outreach alone.
were enrolled in hospice between 4 and 17 days after referral to the palliative care program. The mean length of stay in hospice for patients who enrolled after telephonic outreach alone was 100 days (median ¼ 25.0 days). Compared with patients who elected hospice after receiving one or more home visits from the palliative care team, those who enrolled in hospice after telephonic outreach alone were more likely to be
unmarried, not live alone, be referred to palliative care from the community, have Medicare, and have a performance status score between 10 and 40 (all P < 0.05; Table 2). Multivariate analyses showed that hospice enrollment after telephonic outreach alone was significantly and independently associated with referral from a hospital or nursing home, unmarried status, and more impaired performance status (score between 10 and 40; overall P < 0.05; Table 3).
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Table 3 Predictors of Characteristics of Patients Enrolled in Hospice After Telephonic Outreach Alone Characteristic Referral source Hospital/Nursing homea Community ‘‘Others’’ Performance status (KPS/PPS)b 10e40 (Unable to care for self) 50e90 (Unable to work; able to carry on normal activities)c Marital status Married Not married
Estimate
95% CI
0.5699 0.2306 d
0.1371 to 1.0028 0.5837 to 0.1223 d
0.6453 d 0.3059 d
0.3683 to 0.9223 d 0.6024 to 0.0094 d
P-value 0.0100 0.2002 d <0.0001 d 0.0433 d
KPS ¼ Karnofsky Performance Status Scale; PPS ¼ Palliative Performance Status. In five imputations, the following variables were analyzed: referral source, payer, disease, sex, marital status, poverty, language, KPS/PPS, age (n ¼ 299); of those, referral source, KPS/PPS, and marital status were significant and independent predictors of hospice admission via phone referral. a Patients were referred to palliative care from an institution such as a hospital or nursing home, but were not residing there. b Performance status was measured as a KPS for patients with visits and as PPS for those admitted to hospice after telephonic outreach alone. c Variables were dichotomized in this analysis because of low cell count for those with scores 80e90.
Discussion During the study period, 706 patients were referred to a large community-based, specialist palliative care program and 299 of them (42.3%) were subsequently enrolled in hospice. Of those patients enrolled in hospice, 59.2% elected hospice following telephonic outreach before a home visit by any member of the palliative care team and 40.8% enrolled after one or more home visits. The population of patients served by the palliative care program was sociodemographically and medically diverse,9 and hospice enrollment following telephonic outreach alone was predicted by referral from either a hospital or nursing home, not married status, and poorer performance status. The patients and families who elected hospice following this initial telephonic outreach received a median of three calls over a median of 10 days before requesting a visit from the hospice admissions nurse. After hospice services began, they were continued for an average of 100 days (median 25 days), a figure that exceeds the national average of 71.3 days (median 17.4 days).2 Improving access to hospice is widely-regarded as an important task pursued by specialist programs in palliative care. As community-based palliative care programs evolve, the ability to coordinate this transition to hospice in home settings will assume greater importance. The ability to increase access to hospice using telephonic outreach alone is likely to add meaningful efficiencies to the work of the palliative care program, freeing the time of clinicians for home visits that require other tasks, such as symptom assessment and management. In addition, it is reasonable to assume that efficient telephonic outreach will provide access to hospice services earlier than would be possible if the clinical processes necessary for a transition to hospice care required home visits to accomplish. The present study suggests that palliative care programs may
improve program efficiency and facilitate the educational and administrative processes required for hospice enrollment of appropriate patients through telephonic outreach by trained staff. Although a small number of published reports have described the nature, frequency, or triage of telephonic outreach to seriously ill patients,10e14 there have been no prior studies of hospice enrollment following telephonic outreach after referral for specialist palliative care. The findings require replication and important limitations should be appreciated. The specific tasks performed by the nurses during telephonic outreach to patients who enrolled in hospice before the first visit by a member of the palliative care team were not captured in the data. The delay before hospice enrollment was likely the result of clinical tasks, such as the acquisition of records for eligibility review and family conference calls, but the nature of these tasks and whether the delay to hospice enrollment might also occur for other reasonsd inability to schedule a timely home visit or various administrative delays related to hospicedis not known. Similarly, many other important variables, such as more detailed clinical characteristics and referral questions, were not captured in the available database and could not be evaluated. Given these limitations, the generalizability of the findings to other types of patients, communities, and programs remains to be determined. Notwithstanding, the analysis describes an important phenomenondhospice enrollment following referral to a community-based, specialist palliative care program after telephonic outreach alonedand suggests that both demographic and clinical factors are associated. Given the potential importance of hospice in the delivery of comprehensive home-based services to very ill patients, further study of this phenomenon is warranted.
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Hospice Following Palliative Care Phone Services
Disclosures and Acknowledgments The authors thank Bill Luecken, Stuart Geller, and MJHS Corporate Information Systems staff for their assistance with data analysis and management, and Elizabeth Hilleman and Susan Lage for the information on the telephonic outreach work flow. The authors declare no conflicts of interest.
References 1. Aranda S, Hayman-White K, Devilee L, O’Connor M, Bence G. Inpatient hospice triage of ‘after-hours’ calls to a community palliative care service. Int J Palliat Nurs 2001;7: 214e220. 2. Baldry C, Balmer S. An audit of out-of-hours advice services provided by hospice staff. Int J Palliat Nurs 2000;6: 352e356. 3. Carlebach S, Shucksmith J. A review of an out-of-hours telephone support service for palliative care patients and their families. Int J Palliat Nurs 2010;16:445e450. 4. Dhingra L, Dieckmann NF, Knotkova H, et al. A hightouch model of community-based specialist palliative care: latent class analysis identifies distinct patient subgroups. J Pain Symptom Manage 2016;52:178e186. 5. Gade G, Venohr I, Conner D, et al. Impact of an inpatient palliative care team: a randomized control trial. J Palliat Med 2008;11:180e190. 6. Kerr CW. Clinical impact of a home-based palliative care program: a hospice-private payer partnership. J Pain Symptom Manage 2014;48:883e892.
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7. NHPCO. NHPCO Facts and Figures Hospice Care in America 2015. Available from: http://www.nhpco.org/sites/default/ files/public/Statistics_Research/2015_Facts_Figures.pdf. Accessed January 17, 2017. 8. Phillips JL, Davidson PM, Newton PJ, Digiacomo M. Supporting patients and their caregivers after-hours at the end of life: the role of telephone support. J Pain Symptom Manage 2008;36:11e21. 9. Riggs A, Breuer B, Dhingra L, et al. Hospice enrollment after referral to community-based, specialist-level palliative care: incidence, timing, and predictors. J Pain Symptom Manage 2016;52:170e177. 10. Tay MH, Koo WH, Huang DT. After-hour home care service provided by a hospice in Singapore. Med J Malaysia 2002;57:51e55. 11. Teno JM, Gozalo PL, Bynum JP, et al. Change in end-oflife care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA 2013;309:470e477. 12. Villanueva C, Aggarwal B. The association between neighborhood socioeconomic status and clinical outcomes among patients 1 year after hospitalization for cardiovascular disease. J Community Health 2013;38:690e697. 13. Wilkes L, Mohan S, White K, Smith H. Evaluation of an after hours telephone support service for rural palliative care patients and their families: a pilot study. Aust J Rural Health 2004;12:95e98. 14. Zalenski RJ, Jones SS, Courage C, et al. Impact of palliative care screening and consultation in the ICU: a multihospital quality improvement project. J Pain Symptom Manage 2017;53:5e12.
Journal of Pain and Symptom Management 219
Brief Report
Hospice Enrollment After Referral to Community-Based, Specialist Palliative Care: Impact of Telephonic Outreach Alexa Riggs, BA, Brenda Breuer, PhD, Lara Dhingra, PhD, Jack Chen, MBS, Russell K. Portenoy, MD, and Helena Knotkova, PhD MJHS Institute for Innovation in Palliative Care (A.R., B.B., L.D., J.C., R.K.P., H.K.), New York; Department of Family and Social Medicine (B.B., L.D., R.K.P., H.K.); Department of Neurology (R.K.P.), Albert Einstein College of Medicine, Bronx, New York; and MJHS Hospice and Palliative Care (R.K.P.), New York, New York, USA
Abstract Context. In the U.S., palliative care programs improve access to hospice through enhanced communication and efficiencies in hospice eligibility review and enrollment. For community-based programs, this task may begin with telephone contact. Objectives. To evaluate the incidence and predictors of hospice enrollment following telephonic outreach by a nurse after referral to a community-based, specialist palliative care program. Methods. During 2012e2014, 299 consecutive patients who were referred to a palliative care program and subsequently enrolled in hospice provided electronic health record data for a retrospective cohort study. Those who elected hospice after telephonic outreach and before the first palliative care home visit, were compared with those who enrolled in hospice after palliative care visits began, using both bivariate and multivariate analyses. Results. Mean (SD) age was 74.1 (18.7) years; 60.2% were women, 44.4% were White, 22.5% were Hispanic, 20.9% were Black, and 9.6% were Asian. In total, 177 patients (59.2%) elected hospice following telephonic outreach and 122 (40.8%) enrolled after home visits began. The former group received a mean of 4.5 calls (median ¼ 3.0) before hospice election. In multivariate analysis, hospice enrollment following telephonic outreach alone was associated with hospital or nursing home referral, not married status, and poor performance status (all P < 0.05). Conclusion. More than half of patients electing hospice after referral to a palliative care program did so following telephonic outreach alone. Both sociodemographic and clinical characteristics predicted this outcome. Palliative care programs can improve hospice access through initial telephonic outreach by trained professionals. J Pain Symptom Manage 2017;54:219e225. Ó 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, hospice, chronic illness, telephonic outreach
Introduction In the U.S., hospice is a government-supported program that provides comprehensive services for patients with advanced illness, a large proportion of whom live at home. Although the number of eligible patients who elect the hospice benefit has steadily increased for many years, the program remains
Address correspondence to: Helena Knotkova, PhD, MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, NY 10006, USA. E-mail: Hknotkov@ mjhs.org Ó 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
underutilized, both in terms of the numbers of patients served and the length of stay after enrollment.1,2 Access to hospice may be improved through the work of a palliative care consultation service. In both the hospital setting3,4 and the community setting,5,6 referral to a specialist palliative care service is associated with greater hospice enrollment and a longer hospice length of stay. This outcome presumably
Accepted for publication: March 24, 2017.
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2017.03.007
220
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occurs as a result of communication with experts about the hospice benefit and efficiencies in hospice eligibility review and admission. When a patient in a hospital or nursing home is referred to a palliative care specialist, the first contact usually involves a visit to the bedside. In contrast, homebound patients referred to a community-based palliative care program receive an initial home visit after one or more telephone calls. It is likely that some programs rely on non-professional staff to initiate this telephonic outreach, with the intent to confirm the patient’s interest in a home visit and schedule a time for a home visit. Other programs, however, may require initial contact with clinical staff and use this opportunity to obtain verbal consent for care, collect clinical information from the patient or family, provide information about available services, and prepare for a visit. The latter approach may provide an opportunity to assess the need for information about hospice services. If telephonic outreach can be implemented by professionals with strong communication skills and an accurate understanding of hospice eligibility, it is possible that a subset of seriously ill patients may be able to access hospice services before the first home visit by a member of the palliative care team occurs. However, this potential has not been previously described. We conducted a retrospective cohort study to assess the rate of hospice enrollment after telephonic outreach by a nurse at the time of referral to a community-based specialist palliative care program.
Methods Data were accessed from the electronic health record of MJHS Hospice and Palliative Care, a large not-for-profit hospice agency in New York City. Beginning in 2010, MJHS Hospice and Palliative Care provided a community-based, interdisciplinary, specialist palliative care program, which served a diverse patient population referred by two health plans.7 In a prior analysis,5 hospice-related outcomes were described in a cohort of patients who were managed by the palliative care team during the period 2010e2013. Herein, we analyze data from a second cohort of patients, which was referred between November 2012 and May 2014. In contrast to the earlier study, the current analysis included all patients who were referred to the program, whether or not management by the palliative care team was initiated after referral. The date range evaluated permitted a longer follow-up time to identify hospice admission. Data for the analysis were obtained in an aggregated and de-identified manner, and the study obtained an exemption from review by the New England Independent Review Board. Following referral to the palliative care program, a nurse called the patient’s home and spoke to the
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patient or the patient’s legally authorized representative. The nurses making these calls had access to limited clinical information provided at the time of the referral or obtained subsequently through contact with the patient’s primary physician. The call’s purpose was to inform the patient (or surrogate) that a referral had been made, acquire verbal consent for care, and obtain clinical information that would be useful to clarify the acuity and nature of the patient’s major problems. In most cases, the nurse who called the patient raised the possibility that hospice services may be available in the present or at a later date. This conversation certainly would be initiated if the clinical information available to the nurse at the time of the call indicated that the patient was eligible for hospice, or likely to be eligible, or if a physician’s referral specifically requested help in transitioning the patient to hospice. If the patient or surrogate expressed interest in hospice but the nurse had no specific information about hospice from the patient’s physician, the patient was given general information and told that the nurse would contact the physician to discuss the role of hospice and schedule a second call with the patient. Additional calls to the patient or surrogate also would be scheduled to ensure that all questions were answered. If these contacts culminated in the patient’s or surrogate’s request for hospice enrollment, information was provided about the availability of hospice programs serving the community, and a referral was made to the program selected by the patient. Further contact with the palliative care team was not pursued if a hospice referral was made. Patients who were ineligible for hospice, or declined further discussion about the program, were scheduled for an initial home visit with the physician or nurse practitioner from the palliative care team.7 These patients could be referred to hospice at a later date.
Data Source and Statistical Analysis The cohort for analysis was defined by: 1) referral to the palliative care program during the study period and 2) subsequent admission to the hospice program of MJHS Hospice and Palliative Care. Of the 706 patients referred to the palliative care program during the study period, a total of 299 (42.3%) consecutive patients fulfilled the cohort criteria. Data from these 299 patients were extracted from the electronic health record for this analysis. Baseline sociodemographic variables comprised age, sex, race/ethnicity (Asian, White, Black, Hispanic, other), primary language (English, Spanish, and others), referral source (hospital/nursing home, community including community health plans, and others), primary payer (Medicaid, Medicare, and commercial insurance), living status (lives alone or does not live alone), marital status (married or not married), and poverty status. Poverty status was
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determined from a comparison of the patients’ primary address zip codes and American Community Survey data, which designate the percentage of people in a specific zip code area living below the federal poverty level. Zip codes were categorized into quintiles (Q): Q1 included <10.0% of residents living in poverty, Q2 included 10.0%e19.9%, Q3 included 20.0% e29.9%, Q4 included 30.0%e39.9%, and Q5 included $40%. For the purpose of analysis, the likelihood that a patient lived in poverty corresponded with the ranking of their zip code’s quintile. This methodology has been used as a measure of socioeconomic status in New York City in other studies.5,7,8 Other baseline clinical variables included diagnosis and performance status. Performance status was recorded using the Karnofsky Performance Status Scale for patients with palliative care visits and as Palliative Performance Status (PPS) for those admitted to hospice after telephonic outreach alone. Both scales range from 10 to 100, and for the analysis, the scores were treated as categorical variables with either three or two categories, specifically 10e40 (Unable to care for self), 50e70 (Unable to work), and 80e90 (Able to carry on normal activities), or 10e40 and 50e90. The multivariate analysis was performed with the latter two categories because of the low count of those with scores of 80e90. Longitudinal data included the number of telephone calls, date of hospice enrollment, and length of stay in hospice. All completed calls were included in the count, including those with clinical, administrative, and scheduling purposes. SAS University Edition was used for all analyses, including descriptive statistics, and bivariate and multivariate analyses (SAS Institute, Inc., Cary, NC). Patients who were enrolled in hospice following telephonic outreach alone were compared with patients who enrolled in hospice after one or more home visits by a member of the palliative care team. Logistic regression using the PROC LOGISTIC procedure was applied to assess the predictors of hospice enrollment following telephonic outreach alone. Multiple imputation using the MIANALYZE procedure was used to address missing data by creating multiple datasets for subsequent analyses. Variables with at least 75% of data were included in the imputation process; variables living status, race/ethnicity were excluded from imputation and subsequent analysis.
Results Patient Characteristics The 299 patients who were referred to the palliative care program and subsequently enrolled in hospice had a mean SD age of 74.1, 18.7 years (Table 1).
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Table 1 Characteristics of Patients Admitted to Hospice Following Referral to a Community-Based SpecialistLevel Palliative Care Program (n ¼ 299) Characteristic
Total N
n (%) by Subgroup
Agea N (Mean, SD, min-max, median) Total study sample 298a (74.1, 18.7 1e101, 78) Age # 17 yrs 8 (4.5, 3.89, 1e10, 3.5) Age $ 18 yrs 290 (76.0, 14.8, 25e101, 79.0) Sex 299 Women 180 (60.2) Men 119 (39.8) Race/Ethnicity 187 Asian 18 (9.6) Black 39 (20.9) White 83 (44.4) Hispanic 42 (22.5) Identified as ‘‘other’’ 5 (2.7) Primary language 270 English 208 (77.0) Spanish 32 (11.9) Other 30 (11.1) Marital status 232 Not married 143 (61.6) Married 89 (38.4) Living status 151 Lives alone 23 (15.2) Does not live alone 128 (84.8) Poverty status 299 1 (<10% below poverty) 70 (23.4) 2 (10%e19.9% below 85 (28.4) poverty) 3 (20%e29.9% below 85 (28.4) poverty) 4 (30%e39.9% below 50 (16.7) poverty) 5 ($40% below poverty) 9 (3.0) Referral source 279 78 (28.0) Hospital/Nursing homeb Community 161 (57.7) Others 40 (13.4) Primary payer 246 Medicaid 9 (3.7) Medicare 114 (46.3) Commercial 123 (50.0) Disease diagnosis 278 Cancer 137 (49.3) Neurodegenerative disease 31 (11.2) COPD 15 (5.4) CHF/Cardiac 37 (13.3) Chronic renal failure 5 (1.8) Cirrhosis 6 (2.2) Other 47 (16.9) 248 Performance status (KPS/PPS)c 10e40 (Unable to care for 166 (66.9) self) 50e70 (Unable to work) 78 (31.5) 80e90 (Able to carry on 4 (1.6) normal activities) SD ¼ standard deviation; COPD ¼ chronic obstructive pulmonary disease; CHF ¼ congestive heart failure; KPS ¼ Karnofsky Performance Status Scale; PPS ¼ Palliative Performance Status. In computation of percentages, missing data were excluded. a Data missing for one patient. b Patients were referred to palliative care from an institution such as a hospital or nursing home, but were not residing there. c Performance Status was measured using KPS scores for patients with visits and PPS scores for those admitted to hospice after the telephonic outreach alone.
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Fig. 1. Call data from patients who enrolled in hospice after telephonic outreach alone. Of the 177 patients, call data were available from 132 patients. (a) The number of telephone calls per patient. (b) The distribution of days during which patients received telephone calls. The median is displayed as the horizontal line in the middle of the box, and the x indicates the mean. The outer edges of the box show the 25th and 75th percentiles. The outer bars show the fifth and 95th percentiles; and individual data points are displayed outside of the 95th percentile.
Most spoke English (n ¼ 208, 77.0%) and more than half were women (n ¼ 180, 60.2%). Although most were not married (n ¼ 143, 61.6%), over 80% lived with someone else (n ¼ 128, 84.8%). Race/ethnicity were diverse; 83 (44.4%) were White, 42 (22.5%) were Hispanic, 39 (20.9%) were Black, 18 (9.6%) were Asian, and five (2.7%) were identified as ‘‘other.’’ Almost half of the patients resided in neighborhoods where 20% or more of residents had an income below the federal poverty level (n ¼ 144, 48.1%). Referrals to the palliative care program originated from community-based providers (n ¼ 161, 57.7%), from hospitals or nursing homes (n ¼ 78, 28.0%), or from other sources (n ¼ 40, 13.4%). All patients were chronically ill and the primary diagnoses were cancer (n ¼ 137, 49.3%), neurodegenerative disease (n ¼ 31, 11.2%), chronic obstructive pulmonary disease (n ¼ 15, 5.4%), cardiac diseases (n ¼ 37, 13.3%), chronic kidney disease (n ¼ 5, 1.8%), cirrhosis (n ¼ 6, 2.2%), or other disorders (n ¼ 47, 16.9%). Two-thirds of patients (n ¼ 166, 66.9%) had a
performance status score between 10 and 40 and were unable to provide self-care.
Hospice Enrollment As noted, the 299 patients who enrolled in hospice represented 42.3% of the 706 patients referred to the palliative care program during the study period. A total of 177 of these 299 patients (59.2%) elected hospice following telephone contact and before a home visit was completed by any member of the palliative care team. The remaining 122 patients (40.8%) enrolled in hospice after receiving at least one palliative care home visit. Of the 177 patients who enrolled in hospice after telephonic outreach alone, call data were available from 132 patients (Figs. 1a and 1b), and hospice length of stay was available for 149 patients. Hospice enrollment occurred after a mean of 4.5 calls (median ¼ 3.0) and the calls that occurred before hospice enrollment took place over a mean of 14 days (median ¼ 10.0 days); 50.0% of patients
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Table 2 Bivariate Analysis of Characteristic Comparisons Between Patients Who Enrolled in Hospice After Telephonic Outreach Alone (n ¼ 177) and Those With Full Admission to Palliative Care Including At Least One Visit by the Palliative Care Personnel (n ¼ 122) Characteristic Age N (mean SD) Sex Women Men Race/Ethnicity Asian Black White Hispanic Identified as ‘‘other’’ Primary language English Spanish Other Marital status Not married Married Living status Lives alone Does not live alone Poverty status 1 (#10% below poverty) 2 (10%e19.9% below poverty) 3 (20%e29.9% below poverty) 4 (30%e39.9% below poverty) 5 ($40% below poverty) Disease diagnosis Cancer Neurodegenerative disease COPD CHF/Cardiac Chronic renal failure Cirrhosis Other Referral source Hospital/Nursing homeb Community Others Primary payer Medicaid Medicare Commercial Performance status (KPS/PPS)c 10e40 (Unable to care for self) 50e70 (Unable to work) 80e90 (Able to carry on normal activities) a
Hospice After Palliative Care Phone Referral (n ¼ 177)
Hospice After Palliative Care Full Admission (n ¼ 122)
176 (74.4 17.2)
122 (73.6 20.6)
102 (57.6) 75 (42.4) 14 18 46 20 2
(14.0) (18.0) (46.0) (20.0) (2.0)
78 (63.9) 44 (36.1) 4 21 37 22 3
(4.6) (24.1) (42.5) (25.3) (3.4)
P-value 0.688 0.273
0.186
124 (77.5) 15 (9.4) 21 (13.1)
84 (76.4) 17 (15.5) 9 (8.2)
0.176
77 (55.4) 62 (44.6)
66 (71.0) 27 (29.0)
0.017
6 (8.6) 64 (91.4)
17 (21.0) 64 (79.0)
0.034
36 52 56 28 5
(20.3) (29.4) (31.6) (15.8) (2.8)
34 33 29 22 4
(27.9) (27.0) (23.8) (18.0) (3.3)
0.445
85 15 6 16 5 3 29
(53.5) (9.4) (3.8) (10.1) (3.1) (1.9) (18.2)
52 16 11 23 0 3 21
(43.7) (13.4) (7.6) (17.6) (0.0) (2.5) (15.1)
0.079
56 (33.9) 88 (53.3) 21 (12.7)
22 (19.3) 73 (64.0) 19 (16.7)
0.027
1 (.8) 67 (54.0) 56 (45.2)
8 (6.6) 47 (38.5) 67 (54.9)
0.007
109 (78.99) 29 (21.01) 0 (0.0)
57 (51.82) 49 (44.55) 4 (3.64)
<0.001
SD ¼ standard deviation; COPD ¼ chronic obstructive pulmonary disease; CHF ¼ congestive heart failure; KPS ¼ Karnofsky Performance Status Scale; PPS ¼ Palliative Performance Status. In computation of percentages, missing data were excluded. a Data missing for one patient. b Patients were referred to palliative care from an institution such as a hospital or nursing home, but were not residing there. c Performance Status was measured using KPS scores for patients with visits and as PPS scores for those admitted to hospice after telephonic outreach alone.
were enrolled in hospice between 4 and 17 days after referral to the palliative care program. The mean length of stay in hospice for patients who enrolled after telephonic outreach alone was 100 days (median ¼ 25.0 days). Compared with patients who elected hospice after receiving one or more home visits from the palliative care team, those who enrolled in hospice after telephonic outreach alone were more likely to be
unmarried, not live alone, be referred to palliative care from the community, have Medicare, and have a performance status score between 10 and 40 (all P < 0.05; Table 2). Multivariate analyses showed that hospice enrollment after telephonic outreach alone was significantly and independently associated with referral from a hospital or nursing home, unmarried status, and more impaired performance status (score between 10 and 40; overall P < 0.05; Table 3).
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Table 3 Predictors of Characteristics of Patients Enrolled in Hospice After Telephonic Outreach Alone Characteristic Referral source Hospital/Nursing homea Community ‘‘Others’’ Performance status (KPS/PPS)b 10e40 (Unable to care for self) 50e90 (Unable to work; able to carry on normal activities)c Marital status Married Not married
Estimate
95% CI
0.5699 0.2306 d
0.1371 to 1.0028 0.5837 to 0.1223 d
0.6453 d 0.3059 d
0.3683 to 0.9223 d 0.6024 to 0.0094 d
P-value 0.0100 0.2002 d <0.0001 d 0.0433 d
KPS ¼ Karnofsky Performance Status Scale; PPS ¼ Palliative Performance Status. In five imputations, the following variables were analyzed: referral source, payer, disease, sex, marital status, poverty, language, KPS/PPS, age (n ¼ 299); of those, referral source, KPS/PPS, and marital status were significant and independent predictors of hospice admission via phone referral. a Patients were referred to palliative care from an institution such as a hospital or nursing home, but were not residing there. b Performance status was measured as a KPS for patients with visits and as PPS for those admitted to hospice after telephonic outreach alone. c Variables were dichotomized in this analysis because of low cell count for those with scores 80e90.
Discussion During the study period, 706 patients were referred to a large community-based, specialist palliative care program and 299 of them (42.3%) were subsequently enrolled in hospice. Of those patients enrolled in hospice, 59.2% elected hospice following telephonic outreach before a home visit by any member of the palliative care team and 40.8% enrolled after one or more home visits. The population of patients served by the palliative care program was sociodemographically and medically diverse,9 and hospice enrollment following telephonic outreach alone was predicted by referral from either a hospital or nursing home, not married status, and poorer performance status. The patients and families who elected hospice following this initial telephonic outreach received a median of three calls over a median of 10 days before requesting a visit from the hospice admissions nurse. After hospice services began, they were continued for an average of 100 days (median 25 days), a figure that exceeds the national average of 71.3 days (median 17.4 days).2 Improving access to hospice is widely-regarded as an important task pursued by specialist programs in palliative care. As community-based palliative care programs evolve, the ability to coordinate this transition to hospice in home settings will assume greater importance. The ability to increase access to hospice using telephonic outreach alone is likely to add meaningful efficiencies to the work of the palliative care program, freeing the time of clinicians for home visits that require other tasks, such as symptom assessment and management. In addition, it is reasonable to assume that efficient telephonic outreach will provide access to hospice services earlier than would be possible if the clinical processes necessary for a transition to hospice care required home visits to accomplish. The present study suggests that palliative care programs may
improve program efficiency and facilitate the educational and administrative processes required for hospice enrollment of appropriate patients through telephonic outreach by trained staff. Although a small number of published reports have described the nature, frequency, or triage of telephonic outreach to seriously ill patients,10e14 there have been no prior studies of hospice enrollment following telephonic outreach after referral for specialist palliative care. The findings require replication and important limitations should be appreciated. The specific tasks performed by the nurses during telephonic outreach to patients who enrolled in hospice before the first visit by a member of the palliative care team were not captured in the data. The delay before hospice enrollment was likely the result of clinical tasks, such as the acquisition of records for eligibility review and family conference calls, but the nature of these tasks and whether the delay to hospice enrollment might also occur for other reasonsd inability to schedule a timely home visit or various administrative delays related to hospicedis not known. Similarly, many other important variables, such as more detailed clinical characteristics and referral questions, were not captured in the available database and could not be evaluated. Given these limitations, the generalizability of the findings to other types of patients, communities, and programs remains to be determined. Notwithstanding, the analysis describes an important phenomenondhospice enrollment following referral to a community-based, specialist palliative care program after telephonic outreach alonedand suggests that both demographic and clinical factors are associated. Given the potential importance of hospice in the delivery of comprehensive home-based services to very ill patients, further study of this phenomenon is warranted.
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Disclosures and Acknowledgments The authors thank Bill Luecken, Stuart Geller, and MJHS Corporate Information Systems staff for their assistance with data analysis and management, and Elizabeth Hilleman and Susan Lage for the information on the telephonic outreach work flow. The authors declare no conflicts of interest.
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7. NHPCO. NHPCO Facts and Figures Hospice Care in America 2015. Available from: http://www.nhpco.org/sites/default/ files/public/Statistics_Research/2015_Facts_Figures.pdf. Accessed January 17, 2017. 8. Phillips JL, Davidson PM, Newton PJ, Digiacomo M. Supporting patients and their caregivers after-hours at the end of life: the role of telephone support. J Pain Symptom Manage 2008;36:11e21. 9. Riggs A, Breuer B, Dhingra L, et al. Hospice enrollment after referral to community-based, specialist-level palliative care: incidence, timing, and predictors. J Pain Symptom Manage 2016;52:170e177. 10. Tay MH, Koo WH, Huang DT. After-hour home care service provided by a hospice in Singapore. Med J Malaysia 2002;57:51e55. 11. Teno JM, Gozalo PL, Bynum JP, et al. Change in end-oflife care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA 2013;309:470e477. 12. Villanueva C, Aggarwal B. The association between neighborhood socioeconomic status and clinical outcomes among patients 1 year after hospitalization for cardiovascular disease. J Community Health 2013;38:690e697. 13. Wilkes L, Mohan S, White K, Smith H. Evaluation of an after hours telephone support service for rural palliative care patients and their families: a pilot study. Aust J Rural Health 2004;12:95e98. 14. Zalenski RJ, Jones SS, Courage C, et al. Impact of palliative care screening and consultation in the ICU: a multihospital quality improvement project. J Pain Symptom Manage 2017;53:5e12.