A national study to compare effective management of constipation in children receiving concurrent versus standard hospice care

Abstract

Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose of this study was to evaluated the effectiveness of pediatric concurrent hospice versus standard hospice care to manage constipation. Medicaid data (2011–2013) were analyzed. Children who were less than 21 years enrolled in hospice care and had a hospice enrollment between 1/1/2011 and 12/31/2013 were included. Instrumental variable analysis was used to test the effectiveness of concurrent versus standard hospice care. Among the 18,152 children, approximately 14% of participants were diagnosed or treated for constipation from a non-hospice provider during hospice enrollment. A higher proportion of children received non-hospice care for constipation in concurrent hospice care, compared to standard hospice (19.5% vs 13.2%), although this was not significant (β =0.22, P <0.05) after adjusting for covariates. The findings demonstrated that concurrent care was no more effective than standard hospice care in managing pediatric constipation. Hospice and non-hospice providers may be doing a sufficient job ordering bowel regimens before constipation becomes a serious problem for children at end of life.

Constipation is one of the many distressing and uncomfortable symptoms children experience at end of life.¹ It is defined as stools that are too hard, too small, or too difficult to -expel.² Constipation influences quality of life as children usually suffer with bloating, pain, reflux, nausea, and vomiting.³ Opioid therapy for pain is one of the major causes of constipation at end of life with physical, psychological, and pharmacological factors also contributing to constipation.^4,5 Among dying children in hospice care, more than 25% experience constipation.⁶ Researchers have reported that approximately 50% of children receive medical treatment (e.g., bowel management program) to relieve constipation during hospice care.⁷ Pediatric constipation is often associated with increased health care spending, rehospitalization, and emergency department use.^8–10

What is known about hospice symptom management of constipation at end of life is limited. Among pediatric hospice patients, constipation is frequently one of the top physical symptoms suffered. Hendricks-Ferguson¹ noted that children receiving pediatric hospice care at home during the last week of life experienced increased constipation, along with other gastrointestinal problems (e.g., diarrhea, urinary retention, upset stomach, vomiting). A recent work revealed in a national sample of children that constipation was the fourth most common symptom at the last hospice visit.⁶ Among this group, the prevalence of constipation varied between those with and without multiple complex chronic conditions (2.5% versus 30.1%, respectively). Other researchers have argued that accurate nursing assessment and management of constipation among children in hospice care require good observational and record-keeping skills, along with expert knowledge of the organizational protocols for constipation management.¹¹ Still, roughly 20% of United States hospices do not have guidelines or protocols for managing pediatric opioid-induced constipation.¹² In sum, constipation is a critical symptom experienced by children in hospice, but management is not universal or comprehensive.

Although a single study compared the effectiveness of medications to treat constipation among pediatric oncology patients at end of life,¹³ there is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. New care delivery models such as pediatric concurrent hospice care may offer a promising method to manage symptoms. Because of the 2010 Affordable Care Act, Section 2302, concurrent hospice care allows Medicaid beneficiaries under 21 years with a 6-month to live prognosis to receive health care services for their terminal illness while enrolled in hospice care, pediatric patients have access to the clinicians on the pediatric medical team (e.g., pediatricians, gastroenterologists, oncologists). This access could provide additional guidance and knowledge to the hospice team and family about managing pediatric constipation.¹⁴ These pediatric providers available to children in concurrent hospice care have expertise in the assessment and management of bowel dysfunction and understand pediatric evidence-based treatment regimens.^14–16 Given that hospice clinicians predominately care for elderly patients and might lack the clinical knowledge needed to treat constipation in pediatric patients, the engagement of the child’s medical team may provide additional symptom support at end of life.¹² Thus, concurrent hospice care might improve treatment of pediatric constipation, and ultimately quality of life for children at end of life.

Understanding the effect of concurrent hospice care on constipation management for children is important to advance clinical nursing knowledge and expertise in this area of end-of-life care. One relevant constipation management study which is limited to pediatric oncology patients was identified.¹⁹ This study suggests that broader, national examination of all pediatric hospice patients is needed. Because it provides open access to the pediatric medical team, the concurrent hospice care model may facilitate a higher level of attention and treatment of a symptom – specifically constipation. In addition, providing information on the impact of concurrent hospice care will assist hospice and non-hospice clinicians in understanding the role of health care delivery approaches on symptom management. It will provide information on one end-of-life symptom with the potential for future research on other critical symptoms. Therefore, the purpose of this study was to examine the effectiveness of pediatric concurrent hospice versus standard hospice care to improve symptom management of constipation.

Methods

Theoretical Framework

The Donabedian Model guided the study (Figure 1).¹⁷This model assumes that the structure (context of care delivery), process (transactions between provider and patient), and outcomes (effects on the patient and family) of health care determine the quality of health care. For this study, we conceptualize structure as hospice environment and community environment. Although there are multiple processes in the delivery of hospice care, we will conceptualize the process as the receipt of concurrent care versus standard hospice care. Finally, we conceptualize outcomes of pediatric concurrent hospice care as symptom management. Although there are many symptoms encountered by children in hospice care, we operationalized symptom management for this study as constipation management because it is commonly experience by children at end of life and significantly understudied.²

Figure 1:

Application of Donabedian Model to Pediatric Concurrent Hospice Care

Design and Sample

This study was a retrospective, quasi-experimental design with observational data. The sample was pediatric decedents who were Medicaid hospice beneficiaries. Children <1 to 20 years were included in the study (pediatric concurrent hospice regulations allow only patients up to age 21). Children were included with a hospice enrollment between 1/1/2011 and 12/31/2013 based on hospice per diem claims. All children enrolled in fee-for-service, primary care case management, and managed care plans were retained. Children with either no service-level claims or missing data (i.e., dates of birth, dates of death) were excluded. The final sample was 18,152 children. The study was reviewed and approved by the Institutional Review Board of the University of Tennessee, Knoxville.

Data Sources

The primary data source was the 2011–2013 Center for Medicare & Medicaid (CMS) Medicaid Analytical Extract (MAX) files. These data are national, person-level, and administrative claims files prepared by CMS. The MAX Personal Summary, Other Therapy, Inpatient, and Prescription Drug files were used. Although each state conducts data quality checks on Medicaid data prior to submission to CMS, CMS contracts with Mathematica Policy Research to review state data against tolerance criteria and assist states in making corrections, as necessary. Reports have found no evidence of incomplete data or gross miscoding errors. Medicaid managed-care encounter data has also been assessed for completeness and accuracy and guided the inclusion of states in the study.¹⁸

For this study, we used Medicaid data because they include hospice information on children in all states. Although children may be covered by their parent’s private or commercial insurance,¹⁹ Medicaid is the most common payer of health care for children at end of life in the United States, which ensures that a sufficient sample size can be drawn for analysis. The Medicaid claims data available is comprehensive and enables researchers to create a national database of children in hospice care, rather than being limited to a single institution or state. Additionally, the use of large data such as Medicaid claims allows for empirical evaluation of pediatric outcomes associated with hospice care delivery approaches, which contributes new knowledge to the science of caring for children. We used data from 2011 to 2013 because 2011 was the first full year that concurrent hospice care was enacted and 2013 is the most current year for which data are available.

Other data sources included the publicly-available 2010 US Census data, which provided information on community characteristics. These data were manually linked to the Medicaid files by zip code or Federal Information Processing Standards code. Finally, we used publicly-available CMS Hospice Provider of Services files and CMS Hospice Utilization and Payment files for information on hospice characteristics, which was manually linked by the National Provider Identifier.²⁰

Measures

Dependent variable.

The main outcome variable of symptom management was whether or not children were diagnosed or treated for constipation from a non-hospice provider.⁶ Management of constipation by a hospice provider is not itemized in the Medicaid claims, but rather included in the per diem hospice rate; thus, only non-hospice management could be identified using available data. The MAX Inpatient and Other Therapy files were used to identify constipation, fecal impaction, incomplete defecation, and psychogenic GI disease (ICD-9 codes: 564.0, 560.32, 787.61, 306.40), along with digestive surgery and home health management of fecal impaction and enema administration (CPT codes: 45915, 99511).⁹ Outpatient use of radiographs for constipation in the MAX Inpatient and Other Therapy files were assessed (ICD-9 codes: 87.79, 88.19; CPT codes: 74000, 74010, 74020).^8,9

Independent variable.

The predictor of interest was concurrent versus standard hospice care. Concurrent hospice care as mandated by the ACA, section 2302 states that children enrolled in Medicaid/Children’s Health Insurance Program may receive health care services for their terminal illness during hospice care. Using data from the MAX Other Therapy and MAX Prescription Drug files, a hospice episode defined as the consecutive days of hospice admission based on per diem hospice claims was created.²¹ The episode dates were used to evaluate whether a child received non-hospice prescribed medications during a hospice episode. Hospice episodes with any non-hospice prescribed medications were coded as concurrent care and episodes without as standard hospice care.

Covariates.

Demographic, hospice, and community characteristics were used as control variables. Demographic characteristics included age, gender, race (Caucasian, Black, Other), ethnicity (Hispanic, non-Hispanic), complex chronic condition, multiple complex chronic conditions, mental/behavioral health conditions, and technology dependence. Hospice characteristics were size ( ≤ 50 employees, > 50 employees), ownership (i.e., for-profit, non-profit, & government), years of operation, and pediatric program. Education level (no high school, high school, college), median household income (i.e., ≤ $50,000/yr, > $50,000/yr), region (i.e., Northeast, Midwest, South, West), and rural/urban were measures of the community. The study years were also included.

Data Analysis

The aim of the study was to examined whether children receiving concurrent care would receive greater attention to constipation than children in standard hospice care. Using observational claims data, descriptive statistics were calculated for study variables to examine the data.²²

Although the gold standard for evaluating health care changes is the randomized control trial, it is often impractical in hospice research to randomize children to different approaches to delivering care. Through the use of sophisticated statistics, we were able to approximate randomization to either standard or concurrent hospice care. To test the effectiveness of pediatric concurrent hospice care versus standard hospice care, a comparative effectiveness research approach referred to as instrumental variable (IV) analysis was used.

Instrumental variable analysis approximates randomization in observational data and allows for unbiased estimates of effect in situations where the groups are not comparable due to a lack of systematic randomization. For this study, the size of the child’s medical team was identified as the instrumental variable,^23,24 which was operationalized as the number of medical providers upon hospice admission.²⁵ The assumptions that the instrumental variable should be related to the independent variable and unrelated to the dependent variable were tested using a first-stage regression equation. The validity of the instrumental variable was also tested using the Cragg-Donald Wald test.²⁶ The F statistic and partial R square are reported.

A simultaneous second-stage equation using bivariate probit was conducted to evaluate the effect of concurrent hospice care on symptom management.²⁶ The analysis assessed the relationship between concurrent hospice versus standard hospice care on non-hospice symptom management for constipation, while controlling for the covariates. The analysis was adjusted to account for children with multiple hospice episodes. Results are interpreted as the probability of an outcome for children, who used concurrent hospice care with an increasing size of a medical team. Stata 15.0 was used for all analyses.^27,28

Results

Approximately 14% of the 18,152 children enrolled in hospice care were diagnosed or treated for constipation from a non-hospice provider, including 20% for children in concurrent care and 13% for those in standard hospice (Table 1). Average age of 7 years, female (48%), Caucasian race (54%), and Hispanic ethnicity (22%) was consistent across the entire sample and between concurrent and standard hospice care. The frequency of health issues including complex chronic conditions (56%), multiple complex chronic condition (39%), mental/behavioral conditions (42%), and technology dependence (32%) was consistently higher in the concurrent care group, compared to standard hospice care.

Table 1.

Characteristics of Study Sample (N=18,152)

Variables	Total % or mean(SD)	Concurrent Hospice Care % or mean(SD) n=6,243	Standard Hospice Care % or mean(SD) n=11,909
Constipation Management (%)	14.4	19.5	13.2
Demographic Characteristics
Age	7.4 (6.3)	7.8 (6.3)	7.4 (6.3)
Female (%)	48.8	48.5	49.0
Caucasian (%)	53.8	51.1	54.9
Black (%)	27.2	23.9	28.1
Other Race (%)	19.0	25.0	17.0
Hispanic (%)	22.0	23.2	22.3
Complex Chronic Condition (%)	48.4	56.4	46.6
Multiple Complex Chronic Conditions (%)	28.0	38.6	25.1
Mental/Behavioral Conditions (%)	34.1	41.7	32.1
Technology Dependence (%)	22.9	31.9	20.5
Hospice Characteristics
>50 employees (%)	35.6	38.7	34.7
Non-profit/Government (%)	38.7	38.7	39.9
Years of Operation	18.3 (9.8)	18.6 (9.6)	18.2 (10.0)
Pediatric Program (%)	33.7	37.2	31.6
Community Characteristics
No High School Education (%)	14.0	14.5	13.9
High School Education (%)	24.2	24.9	24.0
College Education (%)	61.8	60.6	62.1
≤ $50,000/yr Household Income (%)	35.6	40.4	33.0
Northeast	57.6	49.4	61.8
Midwest (%)	24.3	22.9	23.8
South (%)	11.8	17.8	<10.0
West (%)	<10.0	10.0	<10.0
Rural (%)	33.4	38.7	31.7

Note: <10 = Unable to report less than 10% per Medicaid Data Use Agreement

The hospice characteristics mirrored the total sample with 36% of large hospices, 39% of non-profit/government, 18 years of operation, and 34% with pediatric programs providing both concurrent and standard hospice care. Children in the sample generally resided in communities with a high percentage of college educated residents (62%), while a third resided in communities with household incomes below $50,000/annually. The most common region was the Northeast (58%) and a third resided in rural areas. Distinguishing differences between concurrent and standard hospice care children included those in concurrent care more frequently resided in communities with low income (40%), the South (18%), and rural areas (39%) than their peers in standard hospice care.

The results of testing the assumptions of the instrumental variable analysis are noted in Table 2. From the first-stage equation, we found the instrumental variable was highly correlated with the independent variable. Medical team size was significantly associated with concurrent hospice care (β = 0.07, p< 0.001). In addition, the test of the instrumental variable strength showed that medical team size was a strong instrument with a statistically significant F-statistic > 10 and partial R² < 0.05. The findings suggest the instrumental variable was valid and appropriate for conducting an instrumental variable analysis.

Table 2.

Impact of Concurrent Hospice Care on Constipation Management (N=18,152)

	First-Stage Equation		Second-Stage Equation
Variables	Concurrent Hospice Care Use β (SE)		Constipation Management β (SE)
Instrument
Medical Team Size	0.07 (0.003)	***
Independent Variable
Concurrent Hospice Care			0.22 (0.132)
Demographic Characteristics
Age	0.01 (0.001)	***	−0.01 (0.005)
Female	−0.01 (0.008)		0.11 (0.075)
Caucasian	0.01 (0.011)		−0.03 (0.090)
Black	−0.01 (0.010)		0.03 (0.094)
Hispanic	0.01 (0.011)		0.13 (0.104)
Complex Chronic Condition	−0.05 (0.008)	***	0.12 (0.061)	*
Multiple Complex Chronic Conditions	0.02 (0.017)		0.48 (0.118)	***
Mental/Behavioral Conditions	0.01 (0.010)		0.44 (0.074)	***
Technology Dependence	0.01 (0.020)		0.03 (0.141)
Hospice Characteristics
>50 employees	−0.02 (0.012)		0.04 (0.083)
Non-profit/Government	0.05 (0.011)	***	0.05 (0.092)
Years of Operation	0.01 (0.001)		0.01 (0.007)
Pediatric Program	0.01 (0.011)		0.12 (0.086)
Community Characteristics
No High School Education	−0.01 (0.001)		−0.01 (0.010)
High School Education	−0.01 (0.001)		−0.01 (0.005)
≤ $50,000/yr Household Income	0.06 (0.011)	***	−0.06 (0.072)
Midwest	0.08 (0.020)	***	0.20 (0.150)
South	0.12 (0.020)	***	−0.07 (0.144)
West	0.08 (0.025)	***	0.16 (0.176)
Rural	0.01 (0.013)		0.02 (0.097)
F-statistic	>10
Partial R2	0.0427

Note:

^*p< 0.05

^**p <0.01

^***p< 0.001

Note: SE, Standard Error

Note: All analyses controlled for study years

Table 2 also shows the results of the instrumental variable analysis estimating the effect of concurrent hospice care on non-hospice symptom management for constipation. From the second-stage equation, concurrent hospice care was not significantly related to symptom management. Children in concurrent hospice care were no more likely than their peers to receive a diagnosis or treatment for constipation from a non-hospice provider. Significant covariates related to symptom management included complex chronic condition (β = 0.12, p < 0.05), multiple complex chronic conditions (β = 0.48 p < 0.05), and mental/behavioral conditions (β = 0.44, p < 0.05). No other covariates were associated with symptom management.

Discussion

As one of the few studies to investigate symptom management among children in hospice care, the goal of this study was to examine the relationship between care delivery approaches and non-hospice management for constipation at end of life. Although 20% of children in concurrent hospice care received non-hospice symptom management compared to 13% for those in standard hospice care, the analysis that controlled for confounding characteristics of the children, hospice, and community found no statistically significant difference between the groups. However, the finding is clinically significant for nurses caring for these children.

The apriori hypothesis was that concurrent hospice care would be more effective than standard hospice in providing an additional layer of health care support for constipation symptoms. Instead, the study findings revealed no difference between concurrent and standard care for children in hospice. A possible explanation may relate to measurement. For this study, symptom management for constipation was operationalized using codes for fecal impaction, enema administration, and radiographs. These diagnosis and procedure codes are frequently used in late-stage constipation.²⁹ Although the codes have been used frequently in the pediatric literature,^8,9 it is possible that hospice and non-hospice staff are doing a sufficient job ordering bowel regimens before constipation becomes a serious problem. Perhaps these late-stage procedures, if they occur, can be handled by either provider. It is also possible that families are self-managing constipation for the children. Families may be administering prophylactic measures for constipation because of opioid use or prior to medical treatments for the terminal illness.³⁰ If these self-management techniques are not improving signs of constipation, the families may be discussing alternative, late-stage approaches with the provider they are seeing at the time, whether it be hospice or non-hospice providers. Future research might explore what bowel regimens children are entering hospice with and once admitted to hospice care, who on the child’s care team is coordinating care for constipation.

The study findings should be interpreted with several limitations in mind. First, the analysis relied on administrative claims data to identify patients with constipation. Using ICD-9 and CPT codes from Personal Summary and Other Therapy Medicaid, files were coded as receiving symptom management from a non-hospice provider. Consequently, there is the possibility of misclassification. However, a thorough assessment of the children’s medication records for prescription evidence of constipation management was conducted (i.e., docusate, lactulose, polyethylene, Senna, and Magnesium citrate)⁸ and identified less than 1% of children with these non-hospice medications. Given this small percentage, the likelihood of misclassifying children based on medication records was slight. Second, the children in the study were Medicaid beneficiaries, which limits external validity. The results are not generalizable to children insured by commercial or Tricare insurance. However, Medicaid is the most common provider of health care insurance for children in the United States and prior work has demonstrated that more children in hospice care are insured by Medicaid than commercial insurance.^19,31 A third limitation was that management by hospice providers could not be ascertained because medications and billing codes were encompassed in the per diem hospice rate.

Keeping these limitations in mind, the findings have several clinical implications for constipation-related symptom management for children in hospice care. At the end of life, many pediatric patients experience suffering related to gastrointestinal symptoms, with estimates of nearly 40% experiencing constipation due to decreased motility, increased opioid use, and disease progression.^5,32 Constipation clinical management should be focused on prevention and early mitigation of discomfort to avoid loss of dignity, particularly among older children and adolescents.⁴ For adults in hospice care, over half of decedent family members report getting help for constipation when needed, indicating constipation is a commonly addressed symptom in this care setting.³³ Future research exploring symptom management among children in hospice care is necessary to elucidate the temporal patterns of late-stage persistent and invasive symptoms, including constipation. Additionally, more work is needed to determine the impact of earlier interventions in the trajectory and the impact of model of care (comprehensive care coordination, palliative care, concurrent hospice, standard hospice).

Conclusion

In summary, the goal of this study was to investigate the impact of pediatric hospice care delivery approaches on constipation management. This study showed that concurrent hospice care was not different than standard hospice care in managing constipation among children at end of life. The findings suggest that the medical team combined with hospice care is as effective at constipation management as hospice care only. Constipation is one of the most common pediatric symptoms at end of life and this knowledge is important for nurses caring for these children.