Objective. Little is known about factors that influence whether children with chronic conditions die at home. We sought to test whether deaths attributable to underlying complex chronic conditions (CCCs) were increasingly occurring at home and to determine what features were associated with home deaths.
Design. A retrospective case series was conducted of all deaths that occurred to children age 0 to 18 years in Washington state from 1980 to 1998 using death certificate data, augmented with 1990 US Census data regarding median household income by zip code in 1989, to determine the site of death.
Results. Of the 31 455 deaths identified in infants, children, and adults younger than 25 years, 52% occurred in the hospital, 17.2% occurred at home, 8.5% occurred in the emergency department or during transportation, 0.4% occurred in nursing homes, and 21.7% occurred at other sites. Among children who died as a result of some form of CCC (excluding injury, sudden infant death syndrome, and non-CCC medical conditions), the percentage of cases younger than 1 year who died at home rose slightly from 7.8% in 1980 to 11.6% in 1998, whereas the percentage of older children and young adults who had a CCC and died at home rose substantially from 21% in 1980 to 43% in 1998. Children who had lived in more affluent neighborhoods were more likely to have died at home. Using leukemia-related deaths as a benchmark, deaths as a result of congenital, genetic, neuromuscular, and metabolic conditions and other forms of cancer all were more likely to have occurred at home. Significant variation in the likelihood of home death, not explained by the individual attributes of the cases, also existed across the 39 counties in Washington state.
Conclusions. Children who die with underlying CCCs increasingly do so at home. Age at death, specific condition, local area affluence, and the location of home all influence the likelihood of home death. These findings warrant additional study, as they have implications for how we envision pediatric palliative care, hospice, and other supportive services for the future.
In the realm of end-of-life care for adults, much emphasis has been placed on where death occurs. During the past few decades, several population-based studies have shown that—despite most patients’ expressing a preference to die at home1,2—the majority of deaths occur in a hospital or other institution.3–8 These studies have documented that age, race, marital status, enrollment in hospice, the exact nature of the condition that caused death, and the pace at which the dying process occurred all potentially affect the site of death. Even after accounting for these individual-level attributes, however, geographical variation still exists in the proportion of deaths that occur in hospitals, which may be attributable to local health system characteristics or some other unmeasured factor.9
Far less is known about the locations where children die or what attributes influence the site of death. Given that a rising proportion of childhood deaths are attributable to complex chronic conditions (CCCs)10,11 and that increasingly sophisticated pediatric medical care is being delivered in the ambulatory setting or at home, a trend toward a greater proportion of deaths occurring at home is a reasonable hypothesis that, if borne out, would have significant policy implications regarding adequate provision of community-based supportive care services.
To address these questions regarding the site of pediatric deaths, we conducted a retrospective case series of all deaths among children aged 0 days to 24 years in Washington state from 1980 to 1998. We specifically sought to test whether an increasing proportion of CCC-associated deaths were occurring at home.
Classification of CCC
We defined CCCs 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 1 organ system severely enough to require specialty pediatric care and probably some period of hospitalization in a tertiary care center. On the basis of this definition and several published lists of International Classification of Diseases, Ninth Revision (ICD-9) codes from earlier studies that examined health service utilization for children with congenital or complicated medical conditions, we mapped specific ICD-9 codes to 9 CCC diagnostic categories10,11: neuromuscular, cardiovascular, respiratory, renal, gastrointestinal, hematologic or immunologic, metabolic, malignancy, and genetic or other congenital defect conditions.
Data Sources and Case Selection and Classification
We used death certificate information for all deaths that occurred in Washington state from 1980 to 1998, which are contained on vital statistics computer files maintained by the Washington State Department of Health. Because several life-limiting pediatric conditions (eg, cystic fibrosis, Duchenne’s muscular dystrophy) typically do not cause death until early adulthood, we selected all cases for whom death had occurred before the 25th birthday. All of the death certificates recorded sex, date of birth, date of death, and county of residence, as well as a single ICD-9 code specifying the “underlying cause of death.” From 1988 to 1998, additional causes of death were specified on the death certificates, with as many as 11 additional diagnoses cited. Examining only the years 1988 to 1998, we determined sensitivity of the single “underlying cause of death” code to identify cases that had any CCC code in any of the diagnosis fields to be 88.8%. Given this high level of sensitivity, we included data from all years (1980–1998) in our analysis, using the “underlying cause of death” code as the basis for all classification of CCC status.
The death certificate files contained limited data regarding socioeconomic status of individual cases. To determine whether a higher level of socioeconomic status was associated with a greater likelihood that the death of a child with a CCC occurred at home, we turned to United States census data. Although such aggregated data encompasses many individuals, studies of health services utilization and outcomes have shown that census data (even aggregated at the level of zip codes) does usefully augment individual-level data when measures of socioeconomic status are otherwise missing.12,13 We therefore used the 1990 Census Summary Tape File 3 to obtain the 1989 median household income by zip code, merging this data to the individual-level data from the death certificates based on the zip code recorded for each case, with a 99.8% successful match.
After examining the proportion of deaths that occurred in all sites, we tested for change in the proportion of children who died at home over time using logistic regression, regressing the occurrence of home death on the year of death and examining the significance of the coefficient for year of death, which was modeled as a continuous variable. We then constructed a more complete logistic regression model that included adjustment covariates of year of death, male gender, nonwhite race, age (modeled as a linear spline with knots at 1 and 6 months and 1, 5, 10, 15, and 19 years of age),14 quintiles of 1989 median household income in the zip code of residence, and indicator variables for each county of residence. Within this model, the predictor of interest—namely, the 9 CCC categories—was compared with leukemia-related cases. We used leukemia-related cases as the benchmark because palliative care for children has chiefly been considered with regard to children with fatal cancer, leukemia-related cases provide a relatively homogeneous group for comparisons, and many physicians at some stage in their training or career have had experience caring for patients in the terminal stages of leukemia. We also examined interaction between age and CCC categories, depicting these interactions graphically. Then using this logistic regression model, we determined whether the addition of county of residence added significantly to the model by using likelihood ratio testing. Assessment of this complete model yielded a Homer-Lemeshow goodness of fit P value of 0.78, with an area under the receiver operating characteristic curve of 0.80 (indicating excellent discrimination). Finally, we calculated the adjusted odds ratio (AOR) of home death for cases over 1 year of age for each county for geographical presentation. For all statistical tests, we deemed P < .05 as significant and calculated 95% confidence intervals (CI) for estimates of the AORs. Analyses were performed using Stata 7.0 (Stata Corp, College Station, TX).
From 1980 through 1998, a total of 31 455 infants, children, and young adults younger than 25 years died in the state of Washington. Of these, 64.8% were males, 80.0% were white, and 39.4% were younger than 1 year. Although the majority of deaths occurred in the hospital (52%), with 17.1% occurring at home, these proportions varied substantially depending on the cause of death (Table 1).
Throughout this period, as seen in Fig 1, infants who died as a result of a CCC did so predominantly in the hospital, ranging from 88.4% to 96.6% with a slight but significant downward trend (P < .01). Beyond the first birthday, however, CCC-related deaths increasingly occurred at home, rising from 21% in 1980 to 43% by 1998 (P < .01 for trend).
Focusing on only those deaths caused by a CCC, the adjusted likelihood of death occurring at home has increased by approximately 6% per year (95% CI, 3%–9%) and also increased as the local residential area in which the child had resided rose in terms of affluence (comparing the highest to the lowest quintile of median household income: AOR: 1.58; 95% CI: 1.06–2.34; Table 2). Neither the child’s gender (male: AOR: 1.11; 95% CI: 0.92–1.34) nor race (nonwhite: AOR: 0.82; 95% CI: 0.63–1.06) were significantly associated with death occurring at home. The underlying cause of the child’s death was strongly associated with the occurrence of death at home. Using leukemia-related deaths as a benchmark, deaths as a result of congenital, genetic, neuromuscular and metabolic conditions, and other forms of cancer all were more likely to have occurred at home (P < .001), whereas deaths as a result of respiratory conditions seem to have been less likely to have occurred at home (P = .015). Age, too, influenced the adjusted probability of death occurring at home, but this effect varied depending on the underlying cause of death (as illustrated in Fig 2 for the 3 CCCs that accounted for the most deaths; variation existed as well within the other CCC types).
Finally, we sought to determine whether the geographic location of the child’s residence in the state influenced the site of death. Given that the vast majority of infants died in the hospital, we restricted this portion of our analysis to cases 1 year of age and older. Even after adjusting for the above-mentioned biological and social attributes, as well as interactions among these attributes, the child or young adult’s county of residence was still significantly associated with the likelihood of the death occurring at home (P < .01). As shown in Fig 3, a map of Washington state that depicts the county-specific AOR of death occurring at home does not reveal a clear pattern regarding proximity to major sites of pediatric tertiary care (which are located in the cities of Portland, Seattle, Spokane, and Tacoma), suggesting that other unidentified factors are influential.
Our study of the location where children have died in Washington state from 1980 to 1998 yielded 3 major findings. First, among deaths attributable to an underlying CCC, a greater proportion occurred at home. Although children who died before the first birthday predominantly died in the hospital throughout the years under study, children who were older than 1 year and died from a chronic condition have been substantially more likely to do so at home, with >40% of recent CCC-related deaths occurring at home. Second, the likelihood of any CCC-related death occurring at home seems to have been significantly modified by both biological and social factors. Children who died exhibited different odds of home death depending on the their specific underlying cause of death. The child’s age at the time of death also influenced the location of death, and this effect varied even more depending on the underlying cause of death. Furthermore, regardless of the underlying CCC condition or the age at the time of death, children who reside in poorer neighborhoods are less likely to die at home. Third, even after adjustment for these temporal trends and the effect of modifying biological and social factors, the likelihood of CCC-related deaths occurring at home still varied substantially across geographic regions of the state.
Deepening our understanding of these findings will require considerable additional research to explicate how biological, technological, social, and cultural factors influence where children with CCCs die. Our current knowledge of pediatric end-of-life care suggests several hypotheses in each of these areas. Regarding biology and technology, the intrinsic nature of certain diseases (with varying degrees of predictability regarding when death will occur and their particular pattern of symptoms and suffering), combined with how medical treatments alleviate or exacerbate the illness experience, may make the process of dying at home either plausible and desirable or extraordinarily difficult, frightening, or otherwise untenable.15–18 Social or cultural factors, however, are best thought of as exerting their influence at different levels. At the most intimate level, families fatigue if the dying process is prolonged, the demands of care are overwhelming, or social and home medical support is lacking.7,19,20 In particular, gravely ill adolescents and their families, after years of living with serious chronic illness, may feel safer in familiar hospital environments, supported by trusted relationships.21 At a more general level, local communities of providers, be they primary care physicians or specialists, may have different practice habits regarding referral to hospice or admission to the hospital for terminally ill adults and variable levels of skill in terms of providing palliative and end-of-life care.5,22 Finally, at the national level, changes in the structure of insurance benefits have been shown to be associated with changes in the location of death for adults.8
Some findings of this study need to be interpreted carefully, because the limited nature of the data we used prevented our analysis from teasing apart all of the possible commingled effects of biological, technological, social, and cultural factors. For example, the influence of CCC types on the likelihood of home death could be attributable to the intrinsic biology of the conditions, the associated medical technology used to treat each condition, or the practice habits of the subspecialty pediatric providers who care for children with different types of CCCs. The apparent effect of community-level household income, to take another example, may be attributable to correlated levels of other socioeconomic resources (eg, health insurance benefits, access to hospice services) or with varying cultural values and beliefs regarding serious illness and death. Similarly, the marked geographic variation in the adjusted percentage of CCC-related deaths over 1 year of age observed across the counties of the state points not only to possible factors such as distance or travel time from home to tertiary medical care but also to unmeasured attributes of either the people who compose the residents in a particular location or of the physical or social environmental context of these specific places that confound our understanding of the determinants of the location of death.23 We believe that each of these associations, regarding CCC type, age, income level, and geographic location, point to the need for more in-depth research than to any definitive interpretations.
The apparent shift over time in the site of CCC-related death from hospital to home, especially beyond infancy, is a more indisputable finding, yet still clearly warrants additional investigation. We need to determine whether this pattern is found in other regions of the United States and whether this trend reflects a purposeful shift to home-based end-of-life care or instead is the product of more fragile, technologically dependent children being treated on an ambulatory basis while residing at home and inadvertently dying there as well.
The findings of this study potentially have substantial implications regarding how our society provides care to children at the end of life. If the temporal trend of an increasing proportion of CCC-related deaths of older children occurring at home is found in other regions of the United States, then we will need to ensure that dying at home represents a desired outcome for these children and their families and that sufficient resources are available to care for children who die at home from CCCs, along with support for their families. This will be particularly important if, as this study suggests, communities that are less affluent are not able to provide adequate support for pediatric patients who die at home. Finally, additional work to understand how biological, technological, social, and cultural factors influence the kind of care that terminally ill children receive at the end of their lives will help us to design better systems of palliative care, hospice, visiting nursing, respite, bereavement care, and other support services to children and their families who live and ultimately die with complex chronic conditions.
This project was supported by a Special Projects award from the Ambulatory Pediatrics Association, by grant K08 HS00002 from the Agency for Health Care Research and Quality, and by the University of Washington Robert Wood Johnson Clinical Scholars Program.
We thank Thomas D. Koepsell, MD, MPH, Frederick P. Rivara, MD, MPH, and Frederick A. Connell, MD, MPH, for thoughtful comments.
- ↵Townsend J, Frank AO, Fermont D, et al. Terminal cancer care and patients’ preference for place of death: a prospective study. BMJ.1990;301 :415– 417
- ↵Katz BP, Zdeb MS, Therriault GD. Where people die. Public Health Rep.1979;94 :522– 527
- ↵Pritchard RS, Fisher ES, Teno JM, et al. Influence of patient preferences and local health system characteristics on the place of death. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Risks and Outcomes of Treatment. J Am Geriatr Soc.1998;46 :1242– 1250
- ↵Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD. Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics.2001;107(6) . Available at: http://www.pediatrics.org/cgi/content/full/107/6/e99
- ↵Geronimus AT, Bound J. Use of census-based aggregate variables to proxy for socioeconomic group: evidence from national samples. Am J Epidemiol.1998;148 :475– 486
- ↵McWhinney IR, Bass MJ, Orr V. Factors associated with location of death (home or hospital) of patients referred to a palliative care team. Can Med Assoc J.1995;152 :361– 367
- ↵Robinson WM, Ravilly S, Berde C, Wohl ME. End-of-life care in cystic fibrosis. Pediatrics.1997;100 :205– 209
- Copyright © 2002 by the American Academy of Pediatrics