Influence of Palliative Care on Medical Treatment of Pediatric Patients with Complex Chronic Diseases at Cook Children's Medical Center

Introduction

Palliative care (PC) is specialized medical care designed to provide comprehensive care (emotional, physical, and spiritual support) to patients with serious illnesses and their families. Services can include discussing treatment options, managing symptoms and pain, analyzing benefit versus burden, assisting with diagnosis comprehension, and/or referring to supportive therapies.

Pediatric patients who would most benefit from PC are those with recurrent hospitalizations, complex care, and/or constant health instability. Many of these are patients with complex chronic conditions (CCC), defined as “any medical condition that can be reasonably expected to last at least 12 months (unless death intervenes) and to involve either several different organ systems or one organ system severely enough to require specialty pediatric care and probably some period of hospitalization in a tertiary care center.” ¹ CCC are often categorized by the primary organ system affected: cardiovascular, gastrointestinal, genetic/other congenital defect, malignancy, metabolic, neuromuscular, pulmonary, and renal.

Children with CCC require additional assistance and specialized healthcare. Caring for a child with a CCC can take a toll on families, many of whom express loneliness and helplessness due to lack of psychosocial support, coordination of care, and bereavement support. ² Families of complex chronically ill pediatric patients who are treated without the support of pediatric PC often endure fragmented care, inadequate involvement in their own medical care, unmet needs, and financial stress.^3,4

Children with CCC may also benefit from a number of supportive therapies not directly affiliated with the care of their disease. Supportive therapy is any treatment designed to improve or sustain the physiological or psychological well-being of the patient and/or his/her family. This includes art therapy, music therapy, child life, biofeedback, acupuncture/acupressure, and so on.

Potential benefits of PC to the patient include providing greater continuity of care, connecting the patient and family desires with medical need, offering a deeper understanding of the diagnosis and treatment options, and assisting with better management of stress and needs of the patient and his or her family members.^3,5,6 PC teams are also available to aid in decision making, transition to comfort care measures, and bereavement counseling and care. PC places emphasis on the needs and desires of the patient and his or her family, to provide an opportunity for optimal quality of life. In addition to serving as a support for the patient and his or her family, the PC team serves as a resource to the physician and healthcare team members involved in the patient's care.

PC also provides potential economic benefit for the patient's family and the healthcare organization without compromising patient care. In the adult population, there is growing evidence that PC may decrease length of stay, cost of care, hospital stays in the ICU, administered medications, and medical interventions.^7,8 Little research has been performed to analyze the economic benefit in the pediatric population. Pediatric PC has been shown to decrease the number and duration of hospitalizations by educating patients and their families and helping to develop strategies that allow them to cope with minor medical emergencies at home. ⁹ Pediatric PC has also been shown to provide benefit, improving quality of life, quality of medical care, continuity of care, and management of family needs.^5,6,10 However, research on the effects of providing pediatric PC services is minimal. Pediatric PC is a relatively new subspecialty, and its service is highly underutilized.^10,11

This study was designed to evaluate the impact of PC services at Cook Children's Medical Center (CCMC) on pediatric patients with CCC. The goals of the study were to (1) identify the population PC serves, (2) assess the difference in treatment plans and hospitalizations of patients with CCC who received PC at CCMC compared with the patients who did not (medications administered, procedures performed, established limits of resuscitation), and (3) raise awareness for this program and the many benefits PC can offer in hopes of inspiring other similar programs and greater utilization of existing programs.

Methods

This study utilized a retrospective chart review to examine medical records of children who died at CCMC between January 1, 2013, and December 31, 2014. Approval from the institutional review board was obtained before beginning this study. A medical records query was performed through Meditec to identify potential qualifying patients. Children were determined to be eligible if they met the following inclusion criteria: (1) between 0 and 24 years of age at time of death, and (2) based on diagnoses that indicated CCC as the cause of death. Children were excluded from the study if they died in the Neonatal Intensive Care Unit, if the cause of death was accident or injury, or if the child died in the Emergency Department without documentation of previous visits at CCMC. Study data were collected and managed using REDCap electronic data capture tools hosted at CCMC. ¹² From each patient record, we collected data on age at death, disease type, number of hospitalizations, PC involvement, length of stay, and if a medical orders for scope of treatment (MOST) order was completed. All information was deidentified before data analysis. The data were checked for quality assurance and to resolve discrepancies.

Analysis was performed to compare patients who never saw PC to those who met with PC at least one time. All data analyses were performed using SAS Enterprise (version 6.1; SAS Institute, Inc., Cary, NC). We described continuous variables as medians and ranges and categorical variables as percentages. For inferential analyses, we used Wilcoxon rank-sum test for ordinal data and chi-square test of independence for categorical variables. Repeated-measures analyses were performed utilizing multilevel linear modeling for ordinal variables and generalized linear mixed modeling with a logistic link function for categorical data to examine the data at the level of the 236 visits rather than the 43 patients. We used a p-value of less than 0.05 as a cutoff for statistical significance.

Results

There were a total of 43 patients in this study (49% male). Only 12 (28%) patients with a CCC who died between January 2013 and December 2014 were seen by PC. The analyses comparing patients who never received PC (0 PC encounters) with those who received PC assistance at least once (>1PC encounter) are shown in Table 1. These groups did not significantly differ statistically in terms of demographic variables—gender or ethnicity—and there were no significant differences in age at death or in disease profile.

Counter to the hypothesis, the PC group did have a statistically significantly greater number of visits and average number of days stayed per visit. Furthermore, analyses demonstrated that hospitalizations involving PC encounters had a longer mean duration of stay than those without PC involvement (Table 2). The average number of medications prescribed per day across all hospitalizations was substantially lower in the group receiving PC. Moreover, hospitalizations with PC encounters involved prescribing significantly fewer medications on average than hospitalizations without PC involvement. Referrals for supportive therapies did not differ between groups with the exception of referrals for art therapy; the group receiving PC had a greater number of referrals for art therapy than those who did not receive PC. Finally, hospitalizations with PC involvement were more likely (35%) to establish limits of resuscitation via MOST than were those without PC involvement (7%; OR = 7.35, 95% CI: 2.52–21.28). This association was not found when we examined the relationship at the individual level, probably due to the lack in statistical power.

Discussion

Only 28% of patients with CCC who died at CCMC between January 2013 and December 2014 were seen by PC. If underutilization is defined as not receiving a service for which benefit exceeds risk, then these data suggest that PC services at CCMC are underutilized. Since PC services at CCMC require a referral, the small percentage of PC involvement is likely a reflection of insufficient referrals for eligible patients rather than a lack of suitable cases. The underutilization of PC has also been documented at other pediatric facilities and may be a reflection of a lack of awareness of the programs and inadequate knowledge of the benefits of pediatric PC services. ¹⁰ This seems plausible considering that the majority of pediatric PC programs have developed in the last 15 years, and PC at CCMC is no exception, as it was established in 2007. ¹³

In comparing patients who had at least one documented encounter with PC to those who did not, the two groups did not differ in demographic variables, disease category, or age at death. We found that there was no statistical difference in age, gender, ethnicity, or CCC type, from which we concluded that there was no particular population target for PC referrals at CCMC.

Patients who had at least one documented encounter with PC had greater numbers of hospitalizations and longer lengths of stay per hospitalization, contrary to our expectation. This discrepancy may be attributed to a form of selection bias. It may simply be a reflection of the complexity of the diseases of the patients we have the opportunity to see and the length of time spent in the hospital before PC consultation. Since PC at CCMC requires a referral, and the patients with the most complex medical dispositions are more likely to require frequent hospitalizations and longer durations of stay, those with repetitive admissions and lengthier stays would be more likely to receive a referral for PC services from their other medical providers due to increased opportunity and desperation of defeated providers.

As anticipated, the patients receiving PC had fewer medications administered per day per hospitalization on average than those without a PC consult. Accounting for the variability between patients by analyzing each patient hospitalization individually allowed us to also note a significant difference between the average number of medications prescribed per day across all hospitalizations. Specific analysis showed that hospital stays in which PC was actively involved entailed prescribing significantly fewer medications on average than other hospitalizations. We believe this finding reflects one of the many advantages of PC: by increasing communication among patients, family members, and the members of the healthcare team, PC assists in balancing medical care with the holistic needs of the patient and his or her family; this often leads to decreased medical intervention in the form of procedures and medication and reduced cost for the patient and his or her family.^6,14

Patient hospitalizations with PC involvement were far more likely (35%) to have a MOST than were those without PC involvement (7%). We believe that this strong association between establishing a MOST and the involvement of PC is a reflection of patients and families gaining understanding of the patient's disease, progression, and knowledge of the risks and benefits of treatment methods for the said disease with the assistance of PC.

At the start of this study, we hypothesized that PC has had a positive impact on the care received by complex chronic pediatric patients in comparison with those who did not receive the same care. However, as we pursued this study, we discovered that defining success in pediatric PC is quite difficult. There are limitations to research in pediatric PC that are dependent on other factors: limitations in population size, perspectives of patients and families, overall holistic goals of PC, and the fact that pediatric PC involves treatment of patients living with disease as opposed to adult PC, which involves caring for actively dying patients.^11,15 Other limitations to this study include small sample size, varying disease severities, reliance on electronic medical records, confounding factors, and necessary referrals for PC services.

Undoubtedly, these data demonstrate that PC services at CCMC are underutilized. We are hopeful that this study will impact future medical care by increasing awareness of PC services and the benefits PC can offer, thereby encouraging utilization of these services. Future studies will be necessary to determine if incorporation of PC services in the care of children with complex chronic medical conditions offers financial or medical benefit.