BACKGROUND:

The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after >75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents.

METHODS:

We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015–2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care.

RESULTS:

The analysis included 180 patients (median age at diagnosis <1 month [interquartile range (IQR): 0–77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2–63), compared with a median of 50 days between diagnosis and death (IQR: 7–210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race.

CONCLUSIONS:

In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care.

When should children with serious illness receive palliative care? Since 2000, The American Academy of Pediatrics has supported an integrated model “in which the components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death.”1  Although there is evidence that consultation is welcomed by patients,2  can lead to better control of symptoms311  and quality of life,6,7,1217  and is associated with reduced costs and health care use,8,9,1216,1824  a minority of children in need of such services receive specialty palliative care. In previous analyses of children who have died, between 4% and 38% had received specialty palliative care.2426 

In recognizing this unmet need for pediatric palliative care (PPC), both barriers and facilitators to consultation have been identified.2,2732  Although researchers have analyzed PPC receipt according to different qualifying conditions10,33  and although a suggested list of trigger diagnoses for PPC is available,34  the timing of initial specialty PPC consultation is not well described. Authors of a single study have explicitly sought to define when PPC consultation occurs,35  and comparable data can be abstracted from other reports (Supplemental Table 4).5,9,10,24,33,36  Although authors of some studies have reported on late palliative care (defined retrospectively from the date of death15,19,22 ),these data are difficult to translate to the real-time decision about when to consult PPC.

Focusing on the timing of PPC consultation in relation to the date of diagnosis, we propose to evaluate factors that predict earlier receipt of PPC. A better understanding of the timing of PPC will help compare current practice to recommendations about early involvement of palliative care, may highlight opportunities to deliver PPC earlier in the course of a life-limiting illness, and may uncover disparities in patients’ access to early PPC. Therefore, our primary aim for the current study is to characterize the timing of PPC consultation relative to diagnosis in a cohort of decedents. Our secondary aim is to determine what factors are associated with delayed receipt of PPC.

The study was approved, and a waiver of informed consent was granted, by the institutional review board (IRB18-00140) at our 476-bed tertiary-academic children’s hospital in the Midwestern United States. In 2016, our hospital reported 18 183 inpatient discharges and 1 425 023 total patient visits for patients from all 50 states and from 52 foreign countries.37  At our hospital, the PPC team (5 attending physicians, 2 nurse practitioners, 1 chaplain, and 1 social worker) has provided inpatient palliative care services since 2009, and our hospital currently staffs >500 consults each year. Using the quality improvement database maintained by the PPC team, we retrospectively identified patients who had received at least 1 inpatient palliative consultation, who had died in the hospital between January 2015 and December 2017, and whose original diagnosis occurred since the PPC team was established. When possible, the date of diagnosis was assigned on the basis of the date of the pathology specimen report or the date recorded in the first PPC consultation note as the date of diagnosis, whichever was earlier. In this way, we might compare our findings with available data (Supplemental Table 4) yet assign diagnosis as the reference point to define timing.

The primary outcome was time from palliative-qualifying diagnosis to earliest receipt of PPC. Covariates included patient age at diagnosis, sex, race and/or ethnicity, private health insurance, place of residence (county where our hospital is located, contiguous counties in the state, or any other place), palliative-qualifying diagnosis (whether an acute event or a type of complex chronic condition38 ), and whether the diagnosis was recommended as an automatic criterion for palliative care consultation, according to proposed PPC referral criteria hosted by the Center to Advance Palliative Care.34  Except when noted otherwise, patient demographic information was obtained at the date of the final admission.

Continuous data were expressed as medians with interquartile ranges (IQRs), and categorical variables were expressed as counts with proportions. The association of covariates with timing of PPC consultation after diagnosis was assessed through a multivariable Cox proportional hazards regression. A statistical analysis was performed by using Stata/IC 14.2 (Stata Corp, College Station, TX), and 2-tailed P < .05 was considered statistically significant.

Two hundred patients in the PPC quality improvement database died while hospitalized between January 2015 and December 2017. Twelve patients were excluded because of a diagnosis before 2009, and 8 patients were excluded because of an unavailable date of a palliative care–qualifying diagnosis. The 180 patients in the study cohort (110 boys and 70 girls) had a median age of <1 month (IQR: 0–77), with the majority having had nonprivate insurance and being of white race (73%; Table 1). From the time of diagnosis, a median of 7 days (IQR: 2–63) passed until the earliest specialty palliative care consultation, and the median duration between diagnosis and death was 50 days (IQR: 7–210; Table 2). A Kaplan-Meier plot of first PPC consultation (median) further illustrates that most patients in our cohort received a PPC consultation within a month of diagnosis (Fig 1). Most patients were admitted to the hospital only once since diagnosis, and the median total hospital stay (across all admissions) was 41 days (IQR: 8–112). On average, the earliest PPC visit occurred after 46% of the time had elapsed between diagnosis and death.

TABLE 1

Characteristics Among Patients Included in Study Population (N = 180)

Patient Characteristicsn (%)
Girls 70 (39) 
Age at diagnosis  
 ≤30 d 97 (54) 
 31 d to 1 y 29 (16) 
 2–6 y 11 (6) 
 7–12 y 14 (8) 
 13–18 y 19 (11) 
 >18 y 10 (6) 
Racea  
 White 116 (73) 
 African American 29 (18) 
 Other 14 (9) 
Private health insurance 70 (39) 
County of residence  
 Hospital’s county 84 (47) 
 Contiguous county 33 (18) 
 Other 63 (35) 
Type of palliative care–qualifying diagnosis  
 Neuromuscular 12 (7) 
 Cardiovascular 37 (21) 
 Pulmonary 20 (11) 
 Malignancy 23 (13) 
 Genetic 28 (16) 
 Renal 4 (2) 
 Gastrointestinal 4 (2) 
 Hematologic and/or immunologic 1 (1) 
 Metabolic 2 (1) 
 Acute event 49 (27) 
Diagnosis met criterion for automatic palliative referral 80 (44) 
Location of death  
 NICU 63 (35) 
 PICU 52 (29) 
 CTICU 36 (20) 
 Hospital floor 28 (16) 
 Other location 1 (1) 
Patient Characteristicsn (%)
Girls 70 (39) 
Age at diagnosis  
 ≤30 d 97 (54) 
 31 d to 1 y 29 (16) 
 2–6 y 11 (6) 
 7–12 y 14 (8) 
 13–18 y 19 (11) 
 >18 y 10 (6) 
Racea  
 White 116 (73) 
 African American 29 (18) 
 Other 14 (9) 
Private health insurance 70 (39) 
County of residence  
 Hospital’s county 84 (47) 
 Contiguous county 33 (18) 
 Other 63 (35) 
Type of palliative care–qualifying diagnosis  
 Neuromuscular 12 (7) 
 Cardiovascular 37 (21) 
 Pulmonary 20 (11) 
 Malignancy 23 (13) 
 Genetic 28 (16) 
 Renal 4 (2) 
 Gastrointestinal 4 (2) 
 Hematologic and/or immunologic 1 (1) 
 Metabolic 2 (1) 
 Acute event 49 (27) 
Diagnosis met criterion for automatic palliative referral 80 (44) 
Location of death  
 NICU 63 (35) 
 PICU 52 (29) 
 CTICU 36 (20) 
 Hospital floor 28 (16) 
 Other location 1 (1) 

CTICU, cardiothoracic ICU.

a

Missing information for 21 patients.

TABLE 2

Outcomes Among Patients Included in Study Population (N = 180)

OutcomesMedian (IQR)
Time from diagnosis to earliest specialty palliative care, d 7 (2–63) 
Time from diagnosis to death, d 50 (7–210) 
No. inpatient admissions 1 (1–2) 
Total d in the hospital 41 (8–112) 
No. inpatient palliative care team consultations 1 (1–2) 
OutcomesMedian (IQR)
Time from diagnosis to earliest specialty palliative care, d 7 (2–63) 
Time from diagnosis to death, d 50 (7–210) 
No. inpatient admissions 1 (1–2) 
Total d in the hospital 41 (8–112) 
No. inpatient palliative care team consultations 1 (1–2) 
FIGURE 1

Kaplan-Meier plot of first PPC consultation (N = 180).

FIGURE 1

Kaplan-Meier plot of first PPC consultation (N = 180).

An additional 21 patients were excluded from only the multivariable analysis because of missing information on race. Because nearly all these patients were <1 week old (ie, race data were missing predominantly in neonates), we considered that data on this covariate were not missing at random and, therefore, did not pursue multiple imputation of patient race. On the multivariable analysis, when compared with cardiovascular diagnoses, pulmonary (hazard ratio [HR] = 0.5; 95% confidence interval [CI]: 0.2–0.9; P = .015) and malignant (HR = 0.5; 95% CI: 0.3–0.96; P = .036) diagnoses were associated with delay of earliest PPC consultation (Table 3). Private health insurance (HR = 1.7; 95% CI: 1.1–2.4; P = .014) and African American race (HR = 1.7; 95% CI: 1.05–2.9; P = .033) were associated with earlier receipt of PPC.

TABLE 3

Cox Proportional Hazards Regression of Time From Diagnosis to Earliest Specialty Palliative Care (N = 159)

CharacteristicsHR95% CIP
Girls 1.0 (0.7–1.4) .824 
Age at diagnosis    
 ≤30 d Reference — — 
 31 d to 1 y 0.9 (0.6–1.5) .785 
 2–6 y 0.7 (0.3–1.7) .462 
 7–12 y 0.5 (0.3–1.1) .089 
 13–18 y 0.7 (0.4–1.3) .265 
 >18 y 1.5 (0.7–3.1) .307 
Race    
 White Reference — — 
 African American 1.7 (1.05–2.9) .033 
 Other 1.3 (0.7–2.4) .454 
Private health insurance 1.6 (1.1–2.4) .014 
County of residence    
 Hospital’s county Reference — — 
 Contiguous county 1.0 (0.6–1.8) .919 
 Other 0.8 (0.5–1.3) .366 
Type of palliative care–qualifying diagnosis    
 Cardiovascular Reference — — 
 Neuromuscular 0.5 (0.2–1.1) .085 
 Pulmonary 0.5 (0.2–0.9) .015 
 Malignancy 0.5 (0.3–0.96) .036 
 Genetic 0.8 (0.4–1.5) .417 
 Other 1.5 (1.0–2.5) .075 
Diagnosis met criterion for automatic palliative care referral 0.9 (0.6–1.3) .562 
CharacteristicsHR95% CIP
Girls 1.0 (0.7–1.4) .824 
Age at diagnosis    
 ≤30 d Reference — — 
 31 d to 1 y 0.9 (0.6–1.5) .785 
 2–6 y 0.7 (0.3–1.7) .462 
 7–12 y 0.5 (0.3–1.1) .089 
 13–18 y 0.7 (0.4–1.3) .265 
 >18 y 1.5 (0.7–3.1) .307 
Race    
 White Reference — — 
 African American 1.7 (1.05–2.9) .033 
 Other 1.3 (0.7–2.4) .454 
Private health insurance 1.6 (1.1–2.4) .014 
County of residence    
 Hospital’s county Reference — — 
 Contiguous county 1.0 (0.6–1.8) .919 
 Other 0.8 (0.5–1.3) .366 
Type of palliative care–qualifying diagnosis    
 Cardiovascular Reference — — 
 Neuromuscular 0.5 (0.2–1.1) .085 
 Pulmonary 0.5 (0.2–0.9) .015 
 Malignancy 0.5 (0.3–0.96) .036 
 Genetic 0.8 (0.4–1.5) .417 
 Other 1.5 (1.0–2.5) .075 
Diagnosis met criterion for automatic palliative care referral 0.9 (0.6–1.3) .562 

—, not applicable.

In our analysis of children who received specialty palliative care and died while hospitalized, the timing of PPC consultation in relation to diagnosis was much earlier (46% of the time from diagnosis to death) than has been previously reported (79%–96%), typically occurring within a month of diagnosis. The multivariable analysis revealed earlier receipt of palliative care for patients with cardiovascular conditions compared with patients with pulmonary or malignant conditions, patients with private health insurance, and patients of African American race. These findings reveal disparities regarding timing of PPC consultation among a cohort in which PPC consultation was frequently provided soon after diagnosis of a life-limiting illness.

The typically short duration from diagnosis to receipt of specialty palliative care may be explained by our institutional history and workflow of the PPC team at our hospital. Our team benefits from nearly 10 years of experience as an available resource in the institution. With a fully staffed interdisciplinary team, we have the ability to supply palliative care to meet the demand of a large number of patients across a wide range of services. Although many PPC programs have grown out of the hematology and oncology population, cardiovascular diagnosis was the most common specific diagnoses group among patients in our cohort. This likely reflects the high infant mortality rate of circulatory-system diseases39  and the well-established process for PPC consultation in our institution’s cardiac unit for children with single-ventricle physiology or consideration of a heart transplant.

Our findings reflect current practice at a large academic children’s hospital and reveal that patients are being referred to PPC earlier in the course of their disease than reported in previous research. It is unclear to what degree this reflects our local experience or, possibly, increasing acceptance of PPC among referring pediatric providers. Limitations of this study include its retrospective, single-center design and focus on a cohort of children who died in the hospital. Although death was an inclusion criterion so as to benchmark against available data (Supplemental Table 4) and although cases were not reviewed as to whether the palliative-qualifying diagnosis was also the cause of death, we used diagnosis, rather than death,15,19,22  as the reference time point to define timing of PPC to better approximate clinical practice. Receipt of palliative care in this analysis refers to specialty, inpatient, consultative care only. It does not account for prenatal palliative care, possible earlier discussions about palliative care, the provision of primary palliative care, or possible requests to delay or decline palliative consultation. Although our analysis revealed patient-level factors associated with differential time from diagnosis to earliest receipt of PPC, further studies may be used to explore these outcomes for all children admitted with a palliative-qualifying diagnosis. Also, all in-hospital decedents may not be eligible to receive specialty PPC (eg, precipitous death from an acute event in an otherwise well child or PPC not available at all institutions), and further studies should be used to explore methods to compare children receiving PPC with appropriately matched cohorts not receiving PPC.

Available evidence supports specialty palliative care as part of the best possible treatment of children with serious illness. Although previous studies have revealed that children with life-limiting conditions often receive PPC (if at all) late in the course of illness, our single-center decedent cohort revealed a pattern of much earlier PPC consultation than what has been previously reported. We also describe factors associated with delayed receipt of PPC. As medicine seeks to provide individualized care, palliation should also be personalized. Specialty PPC is a limited resource and should be provided to those most in need. Our findings (eg, earlier PPC for children with cardiac diagnoses) reveal differences among populations of children who are dying that likely reflect differential disease trajectories and the particular relationship between PPC and the referring service. Future research may be used to build on our findings regarding clinical outcomes and disparities among children who are seriously ill.

Dr Rossfeld conceptualized and helped design the study, coordinated data collection, participated in data analysis, and drafted the initial manuscript; Ms Miller helped design the study, participated in data analysis, and reviewed and revised the manuscript; Drs Fosselman and Ketner helped design the study and participated in data collection; Dr Tumin helped design the study, coordinated data analysis, and reviewed and revised the manuscript; Drs Tobias and Humphrey helped design the study and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted.

FUNDING: No external funding.

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

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