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Journal of Palliative Medicine logoLink to Journal of Palliative Medicine
. 2019 Aug 1;22(8):970–976. doi: 10.1089/jpm.2018.0410

Looking Back, Moving Forward: A Retrospective Review of Care Trends in an Academic Palliative and Supportive Care Program from 2004 to 2016

Gulcan Bagcivan 1,,2, Marie Bakitas 1,,3,,4,, Jackie Palmore 3,,4, Elizabeth Kvale 5, Ashley C Nichols 3,,4, Stephen L Howell 3,,4, J Nicholas Dionne-Odom 1,,3, Gisella A Mancarella 1, Oladele Osisami 1, Jennifer Hicks 3,,4, Chao-Hui Sylvia Huang 3,,4, Rodney Tucker 3,,4
PMCID: PMC7366269  PMID: 30855204

Abstract

Objective: To examine a rural-serving HBPC program's 12-year experience and historical trends to inform future program direction and expansion.

Background: There is limited information about longitudinal trends in mature hospital-based palliative care (HBPC) programs serving racially diverse rural populations.

Methods: This is a retrospective cross-sectional study of operational and patient-reported outcomes from the University of Alabama at Birmingham (UAB) Center for Palliative and Supportive Care (CPSC) inpatient (n=11,786) and outpatient (n=315) databases from October 2004 to March 2016.

Results: Inpatients were a mean age of 63.7 years, male (50.1%), white (62.3%), general medicine referred (19.5%), primarily for goals of care (84.4%); 47.1% had “do not resuscitate/do not intubate” status and 46.9% were transferred to the Palliative Care and Comfort Unit (PCCU) after consultation. Median time from admission to consultation was three days, median PCCU length of stay (LOS) was four days, and median hospital LOS was nine days. Increased emergency department and cardiology referrals were notable in later years. Outpatients' mean age was 53.02 years, 63.5% were female, 76.8% were white, and 75.6% had a cancer diagnosis. Fatigue, pain, and disturbed sleep were the most common symptoms at the time of the visit; 34.6% reported mild-to-moderate depressive symptoms. Of patients reporting pain (64.8%), one-third had 50% or less relief from pain treatment.

Discussion: The CPSC, which serves a racially diverse rural population, has demonstrated robust growth. We are poised to scale and spread our lessons learned to underserved communities.

Keywords: academic palliative and supportive care program, hospital-based palliative care, palliative care experience

Introduction

Despite rapid national growth,1 the Southeastern United States continues to have the fewest hospital-based palliative care (HBPC) programs.2 Nevertheless, the University of Alabama at Birmingham (UAB) is one of the oldest and largest HBPC programs in the nation. Compared with other programs,3–13 UAB is unique and it serves a predominantly rural racially diverse14,15 population. We examined the UAB HBPC program's 12-year experience and historical trends to inform future program direction and expansion. Hence, as one of the earliest and largest HBPC programs, our primary research question was: What are the programmatic characteristics and historical trends in a comprehensive Southeastern HBPC program?

Methods

Design

A retrospective cross-sectional study using UAB Center for Palliative and Supportive Care (CPSC) program inpatient and outpatient clinical databases from October 2004 to March 2016. UAB Institutional Review Board reviewed and approved this study.

Setting and subjects

The UAB CPSC began in 1998 as an outpatient consultation clinic. In 2004, an inpatient palliative care consultation service was initiated, and in 2005, a 12-bed inpatient Palliative and Comfort Care Unit (PCCU) was added. UAB has the only quaternary palliative care program in Alabama.

Data sources and measures

We report data from two distinct sources: an inpatient and an outpatient database. Inpatient demographics (date of birth, medical record identifiers, gender, and ethnicity) and program operational characteristics (hospital/PCCU admission/discharge and consult dates, hospital and PCCU length of stay [LOS], referring service and patient location, reason for consult, resuscitation status, and discharge disposition, including death) were collected on all palliative care consultations and entered manually into a Microsoft Access database.

The UAB outpatient Supportive Care and Survivorship Clinic (SCSC) database comprised the second datasource. Due to programmatic database and electronic health record systems changes, outpatient data reflect two discontinuous quality improvement periods: (early) January 2006 to September 2009 and (later) July 2012 to March 2016. Patients provided consent and completed the patient-reported outcomes (PROs) via paper and pencil instruments during the first period and via a tablet-based electronic system during the second period. Available outpatient data included patient demographics (age, gender, race, and marital status) and PRO: symptoms (M. D. Anderson Symptom Inventory [MDASI]),16 pain intensity (Brief Pain Inventory-Short form [BPI-SF]),17 and depressive symptoms (Patient Health Questionnaire-9 [PHQ-9]).18,19

Data analysis

All data were exported into Excel, de-identified and analyzed using Statistical Package for Social Sciences, version 21.00 (SPSS, Inc., Chicago, IL). Inpatient and outpatient samples were split to examine early versus later program temporal trends. Variables were expressed as descriptive statistics (means and standard deviation or median and range, numbers and percentages), and group differences were examined using Mann–Whitney U test, independent samples test (for continuous variables), and Pearson's chi-square test (for categorical variables). The level of significance (p-value) was 0.05 for all comparisons.

Results

Inpatient consultation and PCCU characteristics

Table 1 shows characteristics of inpatients who received palliative care consultations (n = 11,786). The mean age of overall sample was 63.72 years, 50.1% were male, and 33.2% were black. Patients were most often referred by General Medicine (19.5%) for “goals of care” (84.4%). Forty-seven percent were transferred to the PCCU after consultation. The median time from admission to referral for consultation was three days, the median PCCU LOS was four days, and the median overall hospital LOS was nine days. In the later time period, statistical differences were identified in all areas except gender, time from admission to referral, and hospital LOS.

Table 1.

Inpatient Characteristics and Trends

Characteristic Total (n = 11,786) October 2004 to April 2010 (n = 4304, 36.5%) May 2010 to December 2015 (n = 7482, 63.5%) p
Age (years) (range 0.27–112), mean ± SD 63.72 ± 16.87 64.14 ± 17.31 63.47 ± 16.61 0.008a
Gender, n (%)
 Male 5902 (50.1) 2182 (50.7) 3720 (49.7) 0.307b
Race/ethnicity, n (%)
 White 7345 (62.3) 2445 (56.8) 4900 (65.5)  
 Black 3916 (33.2) 1432 (33.3) 2485 (33.2) <0.001b
 Asian 55 (0.5) 28 (0.7) 27 (0.0)  
 Hispanic 68 (0.53) 21 (0.5) 47 (0.6)  
 Unknown/Other 402 (3.3) 378 (8.8) 23 (0.3)  
Consult location, n (%)
 UAB hospital 11,101 (94.2) 3974 (92.3) 7127 (95.3)  
 UAB emergency department 286 (2.4) 69 (1.6) 217 (2.9) <0.001b
 Direct admission from home 229 (1.9) 129 (3.0) 100 (1.3)  
 Other hospital 136 (1.1) 101 (2.3) 35 (0.5)  
 Children hospital 34 (0.3) 31 (0.7) 3 (0.04)  
Referring service, n (%)
 General Medicine 2295 (19.5) 791 (18.4) 1504 (20.1)  
 Hematology/Oncologyc 2065 (17.5) 734 (17.1) 1331 (17.8)  
 Pulmonary/Critical Care 1875 (15.9) 638 (14.8) 1237 (16.5)  
 Cardiology 976 (8.3) 258 (6.0) 718 (9.6)  
 Surgery subspecialty 850 (7.2) 347 (8.1) 503 (6.7)  
 Neurology 817 (6.9) 279 (6.5) 538 (7.2) <0.001b
 Trauma 605 (5.1) 265 (6.2) 340 (4.5)  
 Gastroenterology 534 (4.5) 176 (4.1) 358 (4.8)  
 Nephrology 435 (3.7) 198 (4.6) 282 (3.8)  
 Emergency department 241 (2.0) 52 (1.2) 189 (2.5)  
 Geriatrics 203 (1.7) 98 (2.3) 105 (1.4)  
 Otolaryngology 168 (1.4) 56 (1.3) 112 (1.5)  
 General Surgery 134 (1.1) 75 (1.7) 59 (0.8)  
 Rehabilitation/Psychiatry 75 (0.6) 54 (1.3) 21 (0.3)  
 Other 215 (1.8) 100 (2.3) 115 (1.5)  
 Missing 298 (2.5) 183 (4.3) 115 (1.5)  
Reason for consultation, n (%)
 Goals of care 9948 (84.4) 3685 (86.2) 6263 (83.7)  
 Nonpain symptom management 1039 (8.8) 296 (6.9) 743 (9.9) <0.001b
 Pain management 644 (5.5) 206 (4.8) 438 (5.9)  
 Withdraw life support 37 (0.3) 37 (0.9)  
 Evaluate for transfer to PCCU 51 (0.4) 26 (0.6) 25 (0.3)  
 Discharge planning 35 (0.3) 27 (0.6) 8 (0.1)  
 Missing 32 (0.3) 27 (0.6) 5 (0.1)  
Resuscitation status at time of consultation, n (%)
 DNR/DNI 5552 (47.1) 1974 (45.9) 3578 (47.8)  
 Full code 3435 (29.1) 1085 (25.2) 2350 (31.4) <0.001b
 DNR/comfort cared 2520 (21.4) 987 (22.9) 1533 (20.5)  
 Unknown 279 (2.4) 258 (6.0) 21 (0.3)  
Transferred to PCCU after consultation, n (%) 5532 (46.9) 2159 (50.2) 3373 (45.1) <0.001b
Discharge disposition, n (%)
 Death 5711 (48.5) 2144 (49.8) 3567 (47.7)  
 Home with hospice 2457 (20.8) 891 (20.7) 1566 (20.9)  
 Home 1317 (11.2) 420 (9.8) 897 (12.0) <0.001b
 Nursing home 771 (6.5) 291 (6.8) 480 (6.4)  
 Signed off before dischargee 639 (5.4) 249 (5.8) 390 (5.2)  
 Home with home health 508 (4.3) 115 (2.7) 393 (5.3)  
 Transfer other facility 167 (1.4) 44 (1.0) 123 (1.6)  
 Hospice residential 151 (1.3) 119 (2.8) 32 (0.4)  
 Other/unknown 65 (0.5) 31 (0.7) 34 (0.4)  
Time from admission to referral for consultation (days), median (range) 3 (0–568) 3 (0–568) 4 (0–307) 0.153a
PCCU LOS (days), median (range) 4 (0–57) 3 (0–46) 4 (0–57) <0.001a
Hospital LOS (days), median (range) 9 (0–956) 9 (0–956) 9 (0–330) 0.727a

Bold values indicate statistical significance.

a

Mann–Whitney U test.

b

Chi-square test.

c

Includes Gynecologic Oncology, Surgical Oncology, and Medical Oncology.

d

Basic nursing care, nutrition, and medical therapies are provided. Not a candidate for surgery, cardiopulmonary resuscitation, intubation, or vasopressors. If the patient is on a ventilator or vasopressors, no escalation in care will be undertaken. The major goal is comfort measures.

e

Palliative care consultation completed while patient still hospitalized.

DNI, do not intubate; DNR, do not resuscitate; LOS, length of stay; PCCU, Palliative and Comfort Care Unit; SD, standard deviation.

Outpatient palliative care service characteristics

Outpatient characteristics are shown in Table 2. The mean age of outpatients was 53.02 ± 13.97 years, 63.5% were female, 76.8% were white, and had a cancer diagnosis (75.6%). Compared with the early time period, patients in the later time period were more likely to be younger, male, black, and had heart failure.

Table 2.

Outpatient Characteristics and Trends

Characteristic Total (n = 315) January 2006 to September 2009 (n = 149) July 2012 to March 2016 (n = 166) p
Age (years) (range 18–97), mean ± SD 53.02 ± 13.97 54.98 ± 14.75 51.27 ± 13.04 0.022a
Gender, n (%)
 Female 200 (63.5) 106 (71.1) 94 (56.6) 0.008b
Ethnicity, n (%)
 White 242 (76.8) 124 (83.2) 118 (71.1) 0.003b
 Black 63 (20.0) 18 (12.1) 45 (27.1)  
 Hispanic 1 (0.3) 1 (0.6)  
 Declined 1 (0.3) 1 (0.6)  
 Other 4 (1.3) 4 (2.7)  
 Unknown 4 (1.3) 3 (2.0) 1 (0.6)  
Marital status, n (%)
 Single 79 (25.1)  
 Married 76 (24.1) c
 Widow 10 (3.2)  
 Missing 150 (47.6)  
Diagnosis, n (%)
 Cancerd 238 (75.6) 123 (82.3) 117 (70.9) 0.001b
 Heart disease 25 (7.9) 2 (1.4) 23 (13.9)  
 Lung disease 7 (2.2) 3 (2.0) 4 (2.4)  
 Othere 42 (13.3) 21 (14.3) 21 (12.7)  
 Missing 3 (1.0) 2 (1.4)  
a

Mann–Whitney U test.

b

Chi-square test.

c

No statistics are computed because time group is a constant.

d

Breast cancer, hematological cancer, gastrointestinal cancer, gynecological cancer, and lung cancer.

e

Stroke, chronic kidney disease, hepatitis, chronic pain syndrome, Sjogren's syndrome, and rheumatoid arthritis.

Bold values indicate statistical significance.

Outpatients' symptom severity, depression, and pain

Table 3 summarizes the previsit symptom severity scores of the total sample and early versus later time periods. Fatigue (tiredness) and pain were the most severe symptoms reported. With the exception of lack of appetite, all other symptom severity scores were higher in the later time period. Patients in the later time period were more likely to report moderate and moderately severe depressive symptoms. Most patients (64.8%) reported pain; however, almost one-third of patients (30%) reported only 50% or less relief from their pain treatment in the last 24 hours. Compared with the early time period, patients in the later time period had higher pain and “worst” pain intensity scores when they presented to the clinic.

Table 3.

Outpatient Symptom Severity and Trends

  Total (n = 315) January 2006 to September 2009 (n = 149) July 2012 to March 2016 (n = 166) p
Symptoms (MDASI), mean ± SD
 Fatigue (tiredness) 6.3 ± 2.9 5.2 ± 3.1 6.9 ± 2.7 ≤0.001a
 Pain 6.1 ± 3.2 5.1 ± 3.3 6.6 ± 3.1 ≤0.001a
 Disturbed sleep 5.6 ± 3.1 4.6 ± 2.8 6.1 ± 3.1 ≤0.001a
 Distressed (upset) 5.1 ± 3.3 4.3 ± 3.2 5.6 ± 3.3 0.003a
 Drowsy (sleepy) 4.2 ± 3.3 3.1 ± 3.0 4.8 ± 3.3 ≤0.001a
 Lack of appetite 3.9 ± 3.2 4.5 ± 3.1 3.6 ± 3.3 0.035a
 Shortness of breath 3.3 ± 3.1 2.2 ± 2.7 3.9 ± 3.2 ≤0.001a
 Nausea 2.6 ± 3.1 1.9 ± 2.7 3.1 ± 3.2 0.002a
Depression level (PHQ-9), n (%)
 None 30 (9.5) 14 (9.4) 16 (9.6)  
 Mild 61 (19.4) 28 (18.8) 33 (19.9)  
 Moderate 48 (15.2) 17 (11.4) 31 (18.7) 0.002b
 Moderately severe 52 (16.5) 16 (10.7) 36 (21.7)  
 Severe 34 (10.8) 16 (10.7) 18 (10.8)  
 Missing 90 (28.6) 58 (38.9) 32 (19.3)  
Pain (BPI)
 Having pain today, n (%)
  Yes 204 (64.8) 78 (52.3) 126 (75.9)  
  No 49 (15.6) 22 (14.8) 27 (16.3) ≤0.001b
  No response 9 (2.9) 9 (5.4)  
  Missing 53 (16.8) 49 (32.9) 4 (2.4)  
 % Relief pain treatment provided, n (%)
  0 28 (8.9) 14 (9.4) 14 (8.4)  
  10 7 (2.2) 4 (2.7) 3 (1.8) 0.026b
  20 12 (3.8) 5 (3.4) 7 (4.2)  
  30 14 (4.4) 7 (4.7) 7 (4.2)  
  40 20 (6.3) 6 (4.0) 14 (8.4)  
  50 14 (4.4) 11 (7.4) 3 (1.8)  
  60 18 (5.7) 5 (3.4) 13 (7.8)  
  70 23 (7.3) 15 (10.1) 8 (4.8)  
  80 32 (10.2) 10 (6.7) 22 (13.3)  
  90 28 (8.9) 9 (6.0) 19 (11.4)  
  100 17 (5.4) 10 (6.7) 7 (4.2)  
  Missing 102 (32.4) 53 (35.6) 49 (29.5)  
Pain (BPI), mean ± SD
Worst pain 6.7 ± 2.93 6.0 ± 3.1 7.4 ± 2.4 ≤0.001a
Least pain 3.9 ± 2.8 3.7 ± 2.8 4.0 ± 2.8 0.374a
Average pain 5.2 ± 3.0 4.8 ± 2.6 5.6 ± 3.3 0.071a
Pain right now 4.6 ± 3.1 4.3 ± 3.0 4.8 ± 3.2 0.159a
a

Independent samples test.

b

Chi-square test.

PHQ-9 (0–27), mild: 5–9; moderate: 10–14; moderately severe: 15–19; severe: >20. MDASI is measured on a 0–10 scale.

Bold values indicate statistical significance.

BPI, Brief Pain Inventory; MDASI, M. D. Anderson Symptom Inventory; PHQ-9, Patient Health Questionnaire-9.

Discussion

This article describes characteristics and historical trends of one of the largest and most mature, U.S. palliative care programs. The UAB palliative care program has demonstrated robust growth since inception, served a substantial number of racially diverse inpatients and outpatients, and treated debilitating symptoms in community-dwelling individuals with serious illness. As the program matured, cardiac and emergency department consults increased and outpatients presented with higher rates of uncontrolled pain and depression.

Some program characteristics and trends were consistent with national data such as increased referral of patients from the emergency department (ED).20 This trend paralleled our internal educational efforts based on clinical observations and published evidence that demonstrated positive associations between earlier or triggered ED referrals and improved quality of life, shortened LOS, and reduced admissions.21,22

Inpatients were most commonly referred for goals of care, pain and nonpain symptoms, and family support. Interestingly, over half of the patients had a do not resuscitate/do not intubate/Comfort Care designation at the time of consultation. This highlights the complexity of determining and clarifying goals of care with families and primary clinical teams even after resuscitation status is determined.

In the later time period, proportionately fewer consult patients were transferred to the PCCU. There are a number of possible explanations for a trend of decreased PCCU transfers. First, even though the number of consultations increased, the number of PCCU beds did not. Second, in 2014, we established General Inpatient Hospice beds allowing for a different option for care transition within the community. And third, over time, clinicians referred patients for consultation earlier, while they were still receiving specialty care (i.e., chemotherapy, surgery, and dialysis), making it more appropriate to incorporate palliative recommendations into their specialty care rather than transfer the patient to the PCCU.

In contrast to the inpatient population, initially, most outpatients were female, white, single, and had cancer. However, this trend also shifted in the later time period, as outpatients were statistically more likely to be younger, black, and have heart disease. This trend may be partially explained by recommendations to involve palliative care in patients being considered for advanced cardiac therapies (e.g., left ventricular assist devices),23 conduct of a clinical trial of providing early concurrent outpatient palliative care to patients with heart failure,24 and growing acceptance of palliative care in this population.25–30

Table 4.

Admission Criteria for Patients Being Considered for Admission to the Palliative Care and Comfort Care Unit

1. PM consultation shall be completed by physician and PCC before transfer to PCCU.
2. PM consultation including assessment of patient-oriented goals of care (which includes resuscitation status, posthospitalization discharge plans, patient desires for advanced technologies, symptom burden, and delineation of surrogate decision makers on patients' behalf) should all be addressed before transfer to PCCU.
3. Goals of care for each patient should be based on palliative and comfort care principles before transfer to PCCU.
4. Patients considered appropriate for transfer to the PCCU may include (but not limited to) those, 16 years of age or older, with the following diagnoses:
 a. End-stage or advanced neoplastic process.
 b. End-stage or advanced heart failure.
 c. End-stage or advanced pulmonary disease or failure.
 d. End-stage or advanced degenerative neurological disease.
 e. End-stage or advanced AIDS or other infectious disease.
 f. End-stage or advanced renal disease.
 g. End-stage or advanced rheumatologic disease.
 h. Multiple comorbidities and advanced age.
 i. Multisystem organ failure of any etiology.
 j. Trauma or burn patients with nonsurvivable injuries.
 k. End-stage or advanced liver disease.
 l. Neoplastic disease with high or uncontrolled symptom burden.
5. Patients appropriate for withdrawal of ventilator support shall be determined by the PM physician. A “DNR” order must be in place for these patients.
6. Patient plan of care may be discussed and determined through the IDT process before transfer.
7. Timing of admission/transfer to PCCU shall be coordinated by PM physician, PCC, and Nurse Manager on a daily basis according to unit census and patient acuity.
8. Direct admissions from Emergency Room setting shall not be accepted to PCCU.
9. Admissions/transfers to PCCU for patients requiring higher acuity levels of care shall be reviewed and approved on a case-by-case basis by attending PM physician, PCC, and Nurse Manager.
10. Patient requiring or requesting continuation of aggressive or advanced technologies such as the following may not be considered appropriate for admission or transfer to the PCCU:
 a. Active intravenous chemotherapy administration.
 b. Renal or peritoneal dialysis.
 c. Invasive hemodynamic or neurogenic monitoring devices.
 d. Left ventricular assist devices.
 e. Extensive equipment needs for orthopedic stabilization or wound care.
 f. Negative air pressure isolation.

DNR, do not resuscitate; IDT, interdisciplinary team; PCC, palliative care coordinator; PCCU, Palliative Care and Comfort Unit; PM, palliative medicine.

Major lessons learned and study limitations include our early focus predominantly on operational metrics, lack of a comprehensive, automated data collection system that was integrated into the clinical workflow, and the lack of an electronic health record that served both inpatients and outpatients. Additionally, clinical standards had not yet been developed, and in the absence of an electronic/automated system to capture inpatient clinical data, the clinician burden of collecting additional clinical parameters was prohibitive. In contrast, the outpatient surveillance database was specifically designed for the dual purpose of providing meaningful real-time clinical data to clinicians and informing research and quality improvement efforts. Change in the ambulatory record system and the need to get patient consent to use the outpatient data for research purposes resulted in a discontinuous database. Thus, the outpatient data must be interpreted conservatively in terms of their generalizability. Despite limitations of our clinical data, reporting program metrics and associated cost data (not reported here) to administrators allowed us to expand program personnel and reach.

Conclusion

There are few reports of racially diverse, large, mature palliative care programs, particularly in the Southeastern United States, with the breadth (three inpatient consultation services [general, veterans, and children's hospitals], two inpatient palliative care units, and two outpatient clinics and telehealth and community-based services) and duration of experiences. Hence, we hope that this study documents the changing trends of moving beyond cancer populations, earlier inpatient referral, and highly symptomatic outpatients. While unique, a program of this size and diversity is not feasible in rural communities. However, due to a generous philanthropic donation, we have created the Southeast Institute for Innovation in Palliative and Supportive Care (SIIPSC) at UAB. SIIPSC has a special focus on scaling and spreading palliative care to rural and underserved populations with limited of no palliative care resources. Figure 1 illustrates that only one third of Alabama hospitals report having a HBPC program. The SIIPSC mission is to develop a collaborative (“hub-and-spoke”) model to educate, discover, and disseminate palliative care across the Southeastern United States. We are in the process of developing networks and collaborations across rural Alabama and the region to share insights and program development lessons learned over more than a decade to accomplish the mission of palliative care everywhere for everyone.

FIG. 1.

FIG. 1.

Location of Alabama hospitals with and without HBPC.

Acknowledgments

We thank all the UAB CPSC staff and especially all patients who we have been privileged to care for since program inception. Dr. Bagcivan is postdoctoral visiting scholar supported by the Scientific and Technological Research Council of Turkey (TUBITAK) (1059B191500575) and University of UAB, School of Nursing Marie L. O'Koren Endowment. Dr. Dionne-Odam has received support from the NIH/NINR (1K99NR015903), the National Cancer Institute (2R25CA047888-24), and the National Palliative Care Research Center. Drs. Bakitas and Dionne-Odam also receive support from the American Cancer Society (RSG PCSM-124668).

Author Disclosure Statement

No competing financial interests exist.

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