REVJUR

Download as pdf or txt
Download as pdf or txt
You are on page 1of 9

Differences in Characteristics of Dying Children Who

Receive and Do Not Receive Palliative Care


WHAT’S KNOWN ON THIS SUBJECT: Pediatric palliative care (PC) AUTHORS: Linda Keele, MD,a Heather T. Keenan, MD, PhD,a
can be beneficial to children with life-threatening conditions and Joan Sheetz, MD,b and Susan L. Bratton, MD, MPHa
their families by providing symptom management and control, aDivision of Critical Care, and bRainbow Kids Palliative Care

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

abstract RR—relative risk


Dr Keele conceptualized and designed the study, analyzed the
OBJECTIVE: Comparing demographic and clinical characteristics as- data, drafted the initial manuscript, and made revisions to the
manuscript; Dr Keenan aided in the conceptualization of the
sociated with receipt of palliative care (PC) among children who died study, and reviewed and revised the manuscript; Dr Sheetz
in children’s hospitals to those who did not receive PC and under- acted as content expert throughout the development of the
standing the trends in PC use. manuscript, and reviewed and revised the manuscript; Dr
Bratton conceptualized and designed the study, aided with
METHODS: This retrospective cohort study used the Pediatric Health analysis of the data, and reviewed and revised the manuscript;
Information System database. Children ,18 years of age who died and all authors approved the final manuscript.
$5 days after admission to a Pediatric Health Information System www.pediatrics.org/cgi/doi/10.1542/peds.2013-0470
hospital between January 1, 2001, and December 31, 2011 were in- doi:10.1542/peds.2013-0470
cluded. Receipt of PC services was identified by the International Accepted for publication Apr 15, 2013
Classification of Diseases, Ninth Revision code for PC. Diagnoses were Address correspondence to Linda Keele, MD, University of Utah,
grouped using major diagnostic codes. International Classification of Department of Pediatrics, PO Box 581289, Salt Lake City, UT 84158-
Diseases codes and clinical transaction codes were used to evaluate 1289. E-mail: [email protected]
all interventions. PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

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

72 KEELE et al
Downloaded from www.aappublications.org/news by guest on September 21, 2018
ARTICLE

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

PEDIATRICS Volume 132, Number 1, July 2013 73


Downloaded from www.aappublications.org/news by guest on September 21, 2018
monitoring or extraventricular device compare children with and without PC had significantly lower median LOS (17
(01.10, 01.28, 01.26), blood product services. Older patient age was asso- vs 21 days) and average daily charges
transfusion (99.0, 99.04, 99.05, 99.06, ciated with increasing receipt of PC ($9348 vs. $11 806) compared with
99.07, 99.09), or cardioversion (99.6, services. Children identified as African those without documented PC services.
99.60, 99.61, 99.62, 99.63, 99.69). PHIS- American received PC significantly less Over the study period, use of the PC code
developed “flags” identified the fol- often than white or Hispanic children. increased significantly, from 94 (1%)
lowing: mechanical ventilation, which Although the majority of all children children who died in 2001–2004, com-
includes ICD-9 codes 96.70, 96.71, or had government-sponsored insurance, pared with 539 (8%) who died in 2009–
96.72 and CTC codes 521166 or 521169; children with PC services were more 2011. Receipt of PC services varied
extracorporeal membrane oxygena- likely to be insured privately. Children significantly by MDC. Infants with con-
tion, which includes ICD-9 code 39.65 or with documented receipt of PC services ditions of the newborn period accounted
CTC code 521181; total parenteral nu-
trition, which includes CTC codes
TABLE 1 Select Demographic and Clinical Features Comparing Children Who Died $5 Days After
(146011, 146040, 146041, 146070); oper- Hospital Admission by Receipt of PC Services
ating room charges, which includes CTC No PC Code, N = 23 423, PC Code, N = 919, P
code of 611110; medical complication, n (%) n (%)
which includes specific ICD-9-Clinical Agea 49 (0–1238) 1000 (39–3647) ,.001
Modification medical complication 0–30 d 11 100 (48) 218 (2)
codes; surgical complication, which 31–365 d 4303 (18) 164 (4)
1–3 y 1944 (8) 97 (11)
includes specific ICD-9- Clinical Modifi- 4–12 y 3223 (14) 264 (29)
cation surgical complication codes; 13–18 y 2853 (12) 176 (19)
NICU, which includes CTC code 600520 Genderb .49
Male 12 866 (55) 488 (53)
and Charge Method of 1, 2, or 10–19; Female 10 552 (45) 431 (47)
and PICU, which includes CTC codes Racec ,.001
(600605, 600620, 600625, 600640, White 9822 (42) 407 (44)
Black 4545 (19) 105 (11)
600645, 600650, 600655, 600699) and Hispanic 4222 (18) 199 (22)
Charge Method of 1, 2, or 10–19. Other 3533 (15) 169 (18)
Payer ,.001
Analysis Private 6412 (27) 281 (31)
Other 4472 (19) 122 (13)
Statistical analysis was performed by Medicaid 12 312 (53) 502 (55)
using SPSS 18.0 (Chicago, IL). We eval- Medicare 227 (1) 14 (2)
LOS (d)a 21 (10–47) 17 (9–36) ,.001
uated receipt of PC among children Average daily charges adjusted for $11 806 ($8017–$18 $9348 ($6070–$15 ,.001
who died in the hospital. Categorical geographya 352) 318)
data were compared using x 2 tests and Year of death ,.0001d
2001–2004 7323 (31) 94 (10)
x2 for trend. Continuous data were 2005–2008 9729 (42) 286 (31)
compared by PC group using nonpa- 2009–2011 6371 (27) 539 (59)
rametric tests. Statistical significance MDC ,.001
Newborns/other neonates with conditions 9693 (41) 183 (20)
was set at a P value of ,.05. Relative originating in the perinatal period
risk (RR) ratio and 95% confidence Respiratory system D/D 3153 (14) 150 (16)
intervals (CIs) were calculated for Circulatory system D/D 2594 (11) 75 (8)
Nervous system D/D 1679 (7) 159 (17)
comparison of receipt of procedures,
Lymphatic, hematopoietic, other malignancies, 1257 (5) 85 (9)
medications, and location of death. chemotherapy, and radiotherapy
Infectious and parasitic diseases, systemic 1068 (5) 58 (6)
or unspecified sites, and HIV infections
RESULTS Digestive system and hepatobiliary system/ 1395 (6) 43 (5)
The cohort comprised 24 342 children pancreas D/D
Other 2584 (11) 166 (18)
who died $5 days after hospitalization. CCC 19 884 (85) 851 (93) ,.001
Of these, 919 (4%) had a documented D/D, diseases and disorders; IQR, interquartile range.
code for PC services during their a Median, IQR.
b Five were missing.
terminal hospital admission. Demog- c One thousand three hundred one were missing.

raphics and clinical features in Table 1 d x 2 for linear trend.

74 KEELE et al
Downloaded from www.aappublications.org/news by guest on September 21, 2018
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.

PEDIATRICS Volume 132, Number 1, July 2013 75


Downloaded from www.aappublications.org/news by guest on September 21, 2018
In our study, only 4% of patients who to PC based on the belief that a referral fant is in the ICU, families might benefit
died received PC. This percent is lower is not needed until curative treatment from the continued support provided
than other contemporary reports.7,16,17 is no longer the sole goal.7,19 More re- by a PC team for infants surviving the
Although the completeness and accu- cently PC and curative care are being neonatal period. It is unclear why so
racy of the billing codes cannot be delivered concurrently; however, fur- few children with circulatory disease
verified, all hospitals had patients with ther investigation is needed to de- received PC.
the PC V-code, so it is unlikely that the termine when, in the course of illness, Children with PC involvement received
low percent of patients is due to lack of children are referred to PC. fewer medical interventions compared
coding for services. If the billing codes Children receiving PC had lower LOS with children without PC, except for
were missing in some cases, they are and average daily charges. Children noninvasive mechanical ventilation.
likely to be randomly missing, so the without PC services lived a median of 4 Receipt of mechanical ventilation
trends found should be representative. days longer before death, and their among patients without PC was 92%,
Low utilization cannot be explained by daily charges were ∼$2500 more. This which is similar to other studies.3,14,16
unexpected deaths because only chil- amount is slightly higher than previous Differences in receipt of invasive pro-
dren who died after 5 days of hospi- estimates but is consistent with other cedures were more pronounced in
talization were included. The initial low studies that found that PC involvement, older children compared with infants,
proportion of PC use could be due to while emphasizing patient and family who received the most interventions.
the time period evaluated. Guidelines care preferences, is associated with Children with specific MDC were more
for pediatric PC were not issued until cost reduction.20–22 likely to receive interventions (dis-
2000,18 and the majority of hospitals Our study showed that coding for PC eases of neonatal period, the cardio-
did not have patients with a V-code increased over the study period, which vascular, infectious, or gastrointestinal
during the first years of the study, is consistent with recent studies systems). This identifies areas in which
which may reflect an absence of PC showing an increase in PC programs subspecialists can optimize patient
services. Also, children who were dis- over the past 10 years.4–7 However, care by promoting early involvement of
charged before death under hospice availability of a PC team does not the PC team.
care were not included in our analysis, equate to widespread use. Johnston Another important area for end-of-life
thus underestimating the overall use of found that in Canada, although 88% of care is pain control. Just under half
PC. the centers evaluated had PC teams, of all dying children received analgesics
Among dying hospitalized children, PC ,16% of patients received these ser- in their final 4 days of life, and only one-
use increased with age. Older children, vices at the time of their death.23 third received sedatives. Parents and
in general, received fewer invasive Our data show that specific disease some providers are concerned that
procedures, but this was more pro- groups are associated with higher re- giving higher doses of these medi-
nounced in the PC group. Children with ceipt of PC. For example, children of all cations may accelerate the dying pro-
diseases of the respiratory system, ages with neurologic disorders were cess; however, Janvier found that
circulatory system, and infectious dis- more likely to receive PC. This is similar time to death after withdrawal of life-
ease were more likely to receive PC as to findings by Feudtner, who found that sustaining treatments did not change
they aged. The reasons for this are neurologic disease was a common di- when increases in these medications
unclear. Most of the children in the agnosis among children receiving PC.10 were given.26 Our results differ from
cohort had CCCs, and thus they likely MDCs associated with less use of PC previous reports showing greater an-
had an established diagnosis and ad- were neonatal disease (2%) and cir- algesic and sedative use at the time of
equate time for a PC referral before culatory disease (2% to 6% by age death.16,17,27–29 It is difficult to fully ex-
death. Historically, PC was considered group). Similar to other studies,16,24,25 plain the lower use of these medi-
only after all possible curative mea- most of the children were ,1 year old cations. It is possible that children
sures had been exhausted. In 2000, the (65%), with the majority being ,30 receiving PC services who were not
American Academy of Pediatrics made days old. Few of these infants had ventilated or undergoing invasive pro-
a statement supporting the concurrent documented receipt of PC. Many NICUs cedures did not require sedation and
use of PC and curative care for children have dedicated social work and sup- pain control. It is also possible that
from the time of diagnosis of a life- port care services as part of the care there was incomplete documentation
threatening illness.18 Previous studies team. Although these services provide of administered medications, although
have demonstrated a delay in referral extensive family support while the in- we assessed receipt in the last 4 days

76 KEELE et al
Downloaded from www.aappublications.org/news by guest on September 21, 2018
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

PEDIATRICS Volume 132, Number 1, July 2013 77


Downloaded from www.aappublications.org/news by guest on September 21, 2018
Group. Cost savings associated with US hos- 24. Feudtner C, Silveira MJ, Christakis DA. 27. Wolfe J, Grier HE, Klar N, et al. Symptoms
pital palliative care consultation programs. Where do children with complex chronic and suffering at the end of life in children
Arch Intern Med. 2008;168(16):1783–1790 conditions die? Patterns in Washington with cancer. N Engl J Med. 2000;342(5):326–
22. Milliman USA. Palliative Care for Children State, 1980–1998. Pediatrics. 2002;109(4): 333
With Life Limiting Illness: An Actuarial 656–660 28. Robinson WM, Ravilly S, Berde C, Wohl ME.
Evaluation of Costs for a New York State 25. Feudtner C, Christakis DA, Zimmerman End-of-life care in cystic fibrosis. Pediatrics.
Medicaid Demonstration Project. Seattle, FJ, Muldoon JH, Neff JM, Koepsell TD. 1997;100(2 pt 1):205–209
WA: Milliman USA; 2003 Characteristics of deaths occurring in 29. van der Wal ME, Renfurm LN, van Vught AJ,
23. Johnston DL, Nagel K, O’Halloran C, et al. children’s hospitals: implications for sup- Gemke RJBJ. Circumstances of dying in
Underutilization of palliative care resour- portive care services. Pediatrics. 2002;109 hospitalized children. Eur J Pediatr. 1999;
ces for pediatric oncology patients in (5):887–893 158(7):560–565
Canada: Results of a Children’s Oncology 26. Janvier A, Meadow W, Leuthner SR, et al. 30. Pantilat SZ, Kerr KM, Billings JA, Bruno KA,
Group Palliative Medicine Committee sur- Whom are we comforting? An analysis of O’Riordan DL. Characteristics of palliative
vey. Support Palliat Cancer Care. 2007;3(2): comfort medications delivered to dying care consultation services in California
77–82 neonates. J Pediatr. 2011;159(2):206–210 hospitals. J Palliat Med. 2012;15(5):555–560

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
Downloaded from www.aappublications.org/news by guest on September 21, 2018
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;

Updated Information & including high resolution figures, can be found at:
Services http://pediatrics.aappublications.org/content/132/1/72
References This article cites 20 articles, 9 of which you can access for free at:
http://pediatrics.aappublications.org/content/132/1/72#BIBL
Subspecialty Collections This article, along with others on similar topics, appears in the
following collection(s):
Hospice/Palliative Medicine
http://www.aappublications.org/cgi/collection/hospice:palliative_me
dicine_sub
Permissions & Licensing Information about reproducing this article in parts (figures, tables) or
in its entirety can be found online at:
http://www.aappublications.org/site/misc/Permissions.xhtml
Reprints Information about ordering reprints can be found online:
http://www.aappublications.org/site/misc/reprints.xhtml

Downloaded from www.aappublications.org/news by guest on September 21, 2018


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;

The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://pediatrics.aappublications.org/content/132/1/72

Data Supplement at:


http://pediatrics.aappublications.org/content/suppl/2013/06/05/peds.2013-0470.DCSupplemental

Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it
has been published continuously since 1948. Pediatrics is owned, published, and trademarked by
the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois,
60007. Copyright © 2013 by the American Academy of Pediatrics. All rights reserved. Print
ISSN: 1073-0397.

Downloaded from www.aappublications.org/news by guest on September 21, 2018

You might also like