REVJUR
REVJUR
REVJUR
sibling support, bereavement services, spiritual guidance, Program, Department of Pediatrics, University of Utah, Salt Lake
support in decision-making about limiting burdensome medical City, Utah
interventions, and advance directives. KEY WORDS
pediatric palliative care, complex chronic conditions
WHAT THIS STUDY ADDS: Little is known about actual receipt of ABBREVIATIONS
PC by dying children. This study compares characteristics of dying CCC—complex chronic condition
CI—confidence interval
children by receipt of PC and highlights underserved patient CTC—clinical transaction codes
groups who could be targeted to improve access. ICD-9—International Classification of Diseases, Ninth Revision
LOS—length of hospital stay
MDC—major diagnostic categories
PC—palliative care
PHIS—Pediatric Health Information System
RESULTS: This study evaluated 24 342 children. Overall, 4% had coding Copyright © 2013 by the American Academy of Pediatrics
for PC services. This increased from 1% to 8% over the study years. FINANCIAL DISCLOSURE: The authors have indicated they have
no financial relationships relevant to this article to disclose.
Increasing age was associated with greater receipt of PC. Children
FUNDING: No external funding.
with the PC code had fewer median days in the hospital (17 vs 21),
received fewer invasive interventions, and fewer died in the ICU (60%
vs 80%). Receipt of PC also varied by major diagnostic codes, with the
highest proportion found among children with neurologic disease.
CONCLUSIONS: Most pediatric patients who died in a hospital did not
have documented receipt of PC. Children receiving PC are different
from those who do not in many ways, including receipt of fewer pro-
cedures. Receipt of PC has increased over time; however, it remains
low, particularly among neonates and those with circulatory diseases.
Pediatrics 2013;132:72–78
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Approximately 55 000 children die ev- The main objectives of this study are to principal payer, and total patient charges.
ery year in the United States,1 with compare demographic and clinical Patient charges provided to PHIS from
∼80% dying in a hospital setting.2 Many characteristics associated with receipt each hospital were derived from the
hospital deaths are due to nonpreven- of PC among children who have died in Centers for Medicare and Medicaid
table causes, including deaths of chil- children’s hospitals to those who died Services wage/price index for the hos-
dren with complex chronic conditions but did not receive PC, and to un- pital’s location and averaged per day.
(CCCs). In 2001, Feudtner stated that derstand the trends in the use of PC in Patients were categorized by diagnosis
∼15 000 children and young adults U.S. children’s hospitals. using major diagnostic categories
between the ages of 0 and 24 years old (MDC). MDCs group principal diagnoses
with CCCs die each year.3 Many of these into 1 of 25 groups based on major
children may benefit from palliative METHODS
organ system or etiology of disease.13
care (PC) services, which address Study Design and Data Source Sixteen of these diagnostic groups had
symptom management and control, This is a retrospective cohort study small patient numbers (,550) and
limiting burdensome medical interven- conducted using the Pediatric Health were grouped into an “other” category
tions; help initiate discussions about Information System (PHIS) database for analysis (listed in Supplemental
advance directives and resuscitation developed by the Children’s Hospital Appendix A). Four small groups with
orders; aid in discerning patient and Association,11 a collaboration of .40 similar organ systems were combined
family preferences; and provide sibling children’s hospitals across the United (ie, HIV grouped with Infections; Digestive
support, bereavement services, and States. The PHIS database consists of System grouped with Hepatobiliary Sys-
spiritual guidance. partially deidentified administrative tem). Patients were identified as having
Recent studies show a steady increase information including demographics, CCCs as defined by Feudtner.14 CCCs
over the past 10 years in PC programs diagnosis, procedures, and charges. were grouped as follows: cardiovascular,
for adults and children.4–7 However, Most PHIS hospitals also submit level II gastrointestinal, hematologic or immu-
data from the National Hospice and data including charges for pharmacy, nologic, malignancy, metabolic, neuro-
Palliative Care Organization in 2010 clinical services, imaging, laboratory, muscular, other congenital or genetic
showed that of the 1.58 million people supply, and other information. This defect, renal, and respiratory.
who used hospice services, only 0.4% cohort includes PHIS hospitals with To understand whether medical inter-
(6320) were aged ,24 years.8 Feudtner complete level II data only. All data are ventions differed among children who
stated that on any given day, ∼5000 checked for reliability and validity be- did or did not receive PC, we examined
children are living within the last 6 fore release. This study qualified for the following: medication use within the
months of their lives.3 The total number exemption from human subjects re- final 4 calendar days of life, procedures
of children receiving PC services is view by the University of Utah In- performed any time during admission,
unknown; however, it is estimated that stitutional Review Board. and location of death. Medications were
8600 children would be candidates for abstracted using clinical transaction
PC services on any given day.9 To de- Patient Selection codes (CTC)15 for analgesics, sedatives,
termine why many children who would We identified children ,18 years of age muscle relaxants, antiinfectives, and
likely benefit from PC are still not re- who died $5 days after admission adrenergics (complete list in Supple-
ceiving these services, it is important between January 1, 2001, and Decem- mental Appendix B). Procedures are
to know who these children are and ber 31, 2011. We chose 5 days to ex- identified by CTC codes and ICD-9
what differences exist between them clude children who died quickly after codes.12 We identified the child’s loca-
and children who do receive PC. hospital admission, thus limiting time tion of death using the unit billing on
A recent study evaluating patient to access PC. Receipt of PC services the last hospital day. ICU location in-
characteristics of children receiving was identified by the International cluded NICUs and PICUs.
PC services found the most common Classification of Diseases, Ninth Re- The following ICD-9 codes and CTC codes
patient diagnoses include genetic/ vision (ICD-9) code12 for PC (V66.7). were used to identify procedures: non-
congenital disorders, neuromuscular invasive mechanical ventilation (93.90),
disorders, and cancer diagnoses.10 Patient Variables arterial catheterization (38.91, 89.61,
Little is known about the character- Patient variables include demographic 89.65, 00.68), central venous catheteri-
istics of dying children not receiving information (child age, gender, and zation (89.62, 89.66, 38.93), hemodialysis
PC. race), length of hospital stay (LOS), (39.95, 38.95), intracranial pressure
74 KEELE et al
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ARTICLE
for 41% of all deaths, but only 2% of analgesics. Finally, fewer patients with in- relatively fewer invasive interventions.
these infants had documentation of PC volvement of PC services were admitted Differences were less pronounced for
services. PC services were more com- to an ICU (RR 0.29; 95% CI 0.26–0.32) those dying from neonatal conditions,
mon among children with diseases of and fewer died in an ICU (RR 0.64; 95% CI diseases of the cardiovascular, gas-
the nervous system (9%) and the he- 0.64–0.72)]. trointestinal systems, or infectious di-
matopoietic system/malignancies (6%) As shown in Table 1, receipt of PC seases (data not shown). For instance,
compared with those with infectious services increased with patient age. among children dying with diseases of
diseases (5%) or diseases of the gas- However, this pattern differed across the lymphatic/hematopoietic system,
trointestinal system (3%). CCCs were MDCs. A significant increase of receipt receipt of mechanical ventilation was
present in 85% of the study cohort. of PC with increasing age was seen for 22% for those with PC compared with
Those with CCCs compared with pa- 75% for those without PC involvement,
those with diseases of the respiratory
tients without CCCs were just over whereas among those dying from
system (3% in infants; 31 days–1 year)
twice as likely to have documented PC conditions of the newborn period, me-
to 7% in teens (13–18 years), diseases
(RR 2.2; 95% CI 1.7–2.8). chanical ventilation was used to treat
of the circulatory system (2% in infants
93% with PC compared with 98% with-
Table 2 outlines differences in proce- to a high of 6% in 4–12 year olds), and
out PC involvement. PC involvement and
dures and medications received and infectious diseases (4% in infants to
death in an ICU also differed across
the care setting. Overall, patients with 7% in teens). Although receipt of PC
MDCs. Among those receiving PC, only
the PC code received significantly less was greater among children dying with
21% with diseases of the lymphatic/
mechanical support, invasive monitors, lymphatic/hematopoietic diseases (6%)
hematopoietic system died in an ICU
supportive care such as total parenteral and neurologic disorders (9%), receipt compared with 66% of children with
nutrition, and operating room charges. of PC did not increase with age. diseases of the respiratory system.
Noninvasive mechanical ventilation was Children with diseases of the re- Differences in use of invasive therapies
more common in children with PC codes spiratory, nervous, and lymphatic/ between patients with and without PC
(RR 1.6; 95% CI 1.3–1.9). Children with hematopoietic system experienced involvement generally increased with
a PC code received significantly fewer greater differences in their end-of-life patient age. For example receipt of
medications including sedatives and care, with those with PC receiving mechanical ventilation differed less for
infants (31–365 days; 84% vs 95%) than
TABLE 2 Select Differences in Procedures, Medications, Complications, and Location of Death for older children (ages 4–18 years;
Among Children Who Died $5 Days After Hospital Admission With Receipt of PC Services
Compared with Those Without
39% vs 81%). A similar pattern was
seen for death in an ICU (infants, 77%
No PC Code, PC Code, RR (95% CI)
N = 23 423, n (%) N = 919, n (%) vs 90%; children 4–18 years, 36% vs
Mechanical ventilation 21 627 (92) 579 (63) 0.14 (0.12–0.16)
77%).
Noninvasive Ventilation 1946 (8) 115 (13) 1.6 (1.3–1.9)
Extra corporeal membrane oxygenation 3197 (14) 43 (5) 0.31 (0.29–0.42) DISCUSSION
Total parenteral nutrition 18 916 (81) 494 (54) 0.67 (0.63–0.7)
Arterial catheterization 8006 (34) 209 (23) 0.67 (0.59–0.75) This study compares demographic and
Central venous catheter/monitoring 13 033 (56) 373 (41) 0.73 (0.67–0.79)
clinical features of children who died in
Hemodialysis 1796 (8) 31 (3) 0.44 (0.31–0.62)
Intracranial pressure monitoring or 118 (0.5) 13 (1) 2.8 (1.6–5.0) a children’s hospital with and without
extraventricular device PC. We found that ,4% of children who
Transfusions 12 045 (51) 366 (40) 0.78 (0.71–0.84) died after $5 days received PC. In this
Cardioversion 3205 (14) 61 (7) 0.49 (0.38–0.62)
Operating room charge 12 462 (53) 311 (34) 0.63 (0.58–0.70) cohort, PC was more common in older
Medical complications 488 (2) 19 (2) 0.99 (0.63–1.6) patients and was associated with
Surgical Ccomplications 8936 (38) 276 (30) 0.79 (0.71–0.87) fewer days of hospitalization before
Medications
Analgesics 10 274 (44) 214 (23) 0.53 (0.47–0.6) death. Receipt of PC has increased over
Sedatives 7361 (31) 93 (10) 0.25 (0.2–0.3) the past decade and varied among
Muscle relaxants 5588 (24) 44 (5) 0.16 (0.12–0.22) MDCs. Overall, children who received
Anti-infective 9947 (43) 149 (16) 0.26 (0.22–0.31)
Adrenergic 7564 (32) 45 (5) 0.15 (0.11–0.2)
PC were less likely to have invasive
Died in ICU (NICU or PICU) 18 618 (88) 493 (60) 0.67 (0.64–0.72) interventions, received fewer medi-
Ever admitted to PICU 12 803 (55) 443 (48) 0.89 (0.82–0.94) cations, and were less likely to die in an
Ever admitted to NICU 9643 (41) 220 (24) 0.58 (0.52–0.65)
ICU.
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ARTICLE
of life to account for differences in re- study and the data are partially dei- 24-hour, 7-days-a-week coverage, and
cording. dentified, limiting the detail of the col- therefore children with short stays
Children in all age groups and across all lected information. Second, not all would not have access to the services.
MDCs receiving PC died less often in the charges are recorded daily at all hos- Lastly, children discharged from the
ICU. The proportion of children dying in pitals; thus, some procedures and hospital to die were not included in the
interventions may have been missed. cohort; this may represent an unknown
the ICU (78%) was similar to previous
Third, a V-code was used to identify proportion of children who received
reports.16,29 Interestingly, among chil-
receipt of PC services The V-code may PC. Despite these limitations, our study
dren with diseases of the lymphatic/
not have been used on all patients who is the only one to date that addresses
hematopoietic system, 72% of those differences between dying hospitalized
actually received palliative services and
without PC died in the ICU versus only children with and without PC.
thus underestimated the total number.
21% of those with PC. This proportion
No other codes were consistently used
of oncology ICU deaths differs from a CONCLUSIONS
to identify receipt of PC. Fourth, there is
report by Wolfe et al, who found that 50%
variation in the composition and scope Children who received PC services un-
of children with cancer die in an ICU.27 of practice among PC teams, which may derwent fewer procedures, had lower
However, the Wolfe study was published account in part for variation in coding LOS, and accrued lower daily charges
in 2000 and may not be comparable and billing by hospital30. Fifth, the re- during their terminal hospitalization.
because ICU, PC, and oncologic care have quirement of a 5-day admission is Receipt of PC has increased over time;
all changed over this time. somewhat arbitrary, but we wanted to however, it remains low overall, espe-
Our study has limitations that should be restrict the study to children able cially in neonates and children with
highlighted. First, this is a retrospective to access PC. Few PC services offer circulatory diseases.
REFERENCES
1. National Center for Health Statistics. www. and Palliative Care Organization; January GenInfo/HCPCSCODINGPROCESS.html. Accessed
cdc.gov/nchs/data/nvsr/nvsr60/nvsr60_04. 2012 March 21, 2012
pdf. Accessed March 21, 2012 9. National Hospice and Palliative Care Orga- 16. Carter BS, Howenstein M, Gilmer MJ, et al.
2. Feudtner C, Feinstein JA, Satchell M, Zhao nization. ChiPPS White Paper: A Call for Circumstances surrounding the deaths of
H, Kang TI. Shifting place of death among Change: Recommendations to Improve hospitalized children: opportunities for
children with complex chronic conditions the Care of Children Living With Life- pediatric palliative care. Pediatrics. 2004;
in the United States, 1989–2003. JAMA. Threatening Conditions. Alexandria, VA: 114(3). Available at: www.pediatrics.org/
2007;297(24):2725–2732 National Hospice and Palliative Care Orga- cgi/content/full/114/3/e361
3. Feudtner C, Hays RM, Haynes G, Geyer JR, nization; October 2001. 17. Wolfe J, Hammel JF, Edwards KE, et al.
Neff JM, Koepsell TD. Deaths attributed to 10. Feudtner C, Kang TI, Hexem KR, et al. Pedi- Easing of suffering in children with cancer
pediatric complex chronic conditions: na- atric palliative care patients: a prospective at the end of life: is care changing? J Clin
tional trends and implications for sup- multicenter cohort study. Pediatrics. 2011; Oncol. 2008;26(10):1717–1723
portive care services. Pediatrics. 2001;107 127(6):1094–1101 18. American Academy of Pediatrics. Commit-
(6). Available at: www.pediatrics.org/cgi/ 11. Children’s Hospital Association. Available at tee on Bioethics and Committee on Hospital
content/full/107/6/E99 www.chca.com. Accessed March 21, 2012 Care. Palliative care for children. Pediat-
4. Morrison RS, Maroney-Galin C, Kralovec PD, 12. World Health Organization. International rics. 2000;106(2 pt 1):351–357
Meier DE. The growth of palliative care Classification of Diseases, Ninth Revision, 19. Thompson LA, Knapp C, Madden V, Shenkman
programs in United States hospitals. J Clinical Modfication. Available at: http:// E. Pediatricians’ perceptions of and pre-
Palliat Med. 2005;8(6):1127–1134 icd9cm.chrisendres.com. Accessed March ferred timing for pediatric palliative care.
5. Leif Wellinton Haase. Entering the main- 21, 2012 Pediatrics. 2009;123(5). Available at: www.
stream: pediatric palliative care comes of 13. Agency for Healthcare Research and Qual- pediatrics.org/cgi/content/full/123/5/e777
age. Available at www.chpcc.org. Accessed ity. Available at www.ahrq.gov. Accessed 20. Bruera E, Billings JA, Lupu D, Ritchie CS;
November 14, 2012 June 15, 2012 Academic Palliative Medicine Task Force of
6. Center to Advance Palliative Care. Available 14. Feudtner C, Christakis DA, Connell FA. Pedi- the American Academy of Hospice and
at www.capc.org. Accessed November 14, atric deaths attributable to complex chronic Palliative Medicine. AAHPM position paper:
2012 conditions: a population-based study of requirements for the successful develop-
7. Johnston DL, Vadeboncoeur C. Palliative Washington State, 1980–1997. Pediatrics. ment of academic palliative care programs.
care consultation in pediatric oncology. 2000;106(1 pt 2):205–209 J Pain Symptom Manage. 2010;39(4):743–
Support Care Cancer. 2012;20(4):799–803 15. Centers for Medicare and Medicaid Serv- 755
8. NHPCO Facts and Figures: Hospice Care in ices. Clinical transaction codes. Available at: 21. Morrison RS, Penrod JD, Cassel JB, et al;
America. Alexandria, VA: National Hospice www.cms.gov/Medicare/Coding/MedHCPCS- Palliative Care Leadership Centers’ Outcomes
ZIP CODES AND ME: I was at the checkout counter the other day when, as so often
happens, the woman at the register asked for my zip code. I am always irked by
this request. After all she already had my credit card and a photo identification
card. Sometimes, after sliding my credit card at a self-service gas pump, I am
asked for my zip code to ensure that the card being used is not stolen. In those
situations I always type in my correct zip code. It turns out, however, that my
hesitancy to give retail store clerks my correct zip code is well-founded. As
reported on CNN (Money: April 18, 2013), the 5-digit zip code is used to confirm my
identity and eventually link my purchase with other personal traits and habits.
The retail store gets the name of the customer from the credit card. The zip code
is used to confirm that the purchaser is the Bill Smith from Burlington, Vermont
rather than Cedar Rapids, Iowa. Now the retailer can track and analyze pur-
chasing habits and predict what I am doing or will need in the future. If I buy rakes
and shovels, computer modeling would suggest that I am engaged in a project
around the house. The retailer can begin targeted advertising or sell the in-
formation to data brokers. Data brokers store vast amounts of information about
each of us. The largest data broker in the US claims that it has stored the age,
marital status, education and income levels, political leanings, and even hobbies
on almost 200 million individuals. The information about me can be packaged and
sold to banks, other retailers, and even social media sites. Clearly, there is little
privacy in the digital age. I try my best to preserve what little I have. Because
customers are not required to give their home zip code to complete their pur-
chase, I always reply to the sales clerk’s request with a smile and a firm no. You
might consider doing the same.
Noted by WVR, MD
78 KEELE et al
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Differences in Characteristics of Dying Children Who Receive and Do Not
Receive Palliative Care
Linda Keele, Heather T. Keenan, Joan Sheetz and Susan L. Bratton
Pediatrics 2013;132;72
DOI: 10.1542/peds.2013-0470 originally published online June 10, 2013;
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References This article cites 20 articles, 9 of which you can access for free at:
http://pediatrics.aappublications.org/content/132/1/72#BIBL
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