Dying in America Improving Quality and Honoring Individual Preferences Near the End of Life (2015) / Chapter Skim
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Appendix F: Pediatric End-of-Life and Palliative Care: Epidemiology and Health Service Use
Appendix F: Pediatric End-of-Life and Palliative Care: Epidemiology and Health Service Use
Pages 533-572
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health care system can better meet the needs of patients approaching the end of life. Pediatric patients who die are widely acknowledged to present many challenges that distinguish them from adult patients: they live with and die from a wide array of often-rare diseases that require specialized care; the trajectory of their illness experiences is often either much shorter or far longer than that of adult patients; the child is always cared for in the context of a family, which also needs support and often care; the mechanism of financing health care in general and palliative care specifically is different for the young versus older adults; and serious pediatric illness and death during childhood present emotional and even spiritual challenges to those who love and care for these patients.
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Many of the most important aspects of pediatric end-of-life care can be understood only with what might be called the "3-foot view," obtained by sitting with patients and parents and care providers and listening to and learning from their experiences. This appendix, by contrast, is based on national mortality and health service data that offer a 3,000-foot view whereby general trends of disease and care can be seen, and on clinically detailed hospital data that allow a more specific 300-foot view of the ways in which groups of patients have received care.
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Serious pediatric illness and life-threatening conditions are not prerequisites for the appropriate receipt of pediatric palliative care; patients with less severe forms of disease can also benefit from such care. Pediatric age range: The range of ages at which patients with serious illness and life-threatening conditions are often treated by pediatric-oriented health care providers and hospitals.
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. For pediatric patients with serious illness and life-threatening conditions, however, this transition is often delayed or avoided entirely because of concerns regarding continuity of care for very ill patients, or the need for specialized knowledge about disease processes or treatments that resides predominantly in pediatric clinicians and children's hospitals.
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; expected payment source; total hospital charges; and hospital characteristics (e.g., region, trauma center indicator, urban-rural location, teaching status)
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; and total hospital charges (for inpatient stays for ED visits that result in admission)
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To date, only a limited number of epidemiologic and health services research studies regarding pediatric mortality and pediatric end-of-life and palliative care have used these data sources. There is a compelling need for data that would provide a longitudinal "all services" perspective on the health care experience of pediatric patients with serious illness.
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FIGURE F-1a Annual number of pediatric deaths in the United States, 1968-2010. SOURCE: Based on Multiple Cause of Death data 1968-2010 from CDC WONDER online database.
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Figure F-1b SOURCE: Based on Multiple Cause of Death data 1968-2010 from CDC WONDER online database.
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Figure F-2a A closer look at the age distribution of pediatric deaths within the first year of life reveals the prominence of deaths within the first hours of life (see Figure F-2b)
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, and these cases are also likely to benefit from the receipt of palliative care. Toward the other end of the spectrum are cases of children who are unlikely to live out a normal life span, can be expected to live with significant impairments, and may or may not currently have symptoms that could be ameliorated with palliative care interventions (so-called life-limiting conditions)
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544 DYING IN AMERICA Certain infectious and parasitic diseases Conditions originating in the perinatal period Congenital malformations and chromosomal abnormalities Diseases of the blood and the immune mechanism Diseases of the circulatory system Diseases of the digestive system Diseases of the ear and mastoid process Diseases of the eye and adnexa Diseases of the genitourinary system Diseases of the nervous system Diseases of the respiratory system Diseases of the skin and subcutaneous tissue Endocrine, nutritional, and metabolic diseases External causes of morbidity and mortality Mental and behavioral disorders Musculoskeletal system and connective tissue Neoplasms Other symptoms, signs, and abnormal findings Pregnancy, childbirth, and the puerperium 0 10 20 30 40 50 Percentage FIGURE F-3 Major causes of pediatric death. SOURCE: Based on Multiple Cause of Death data 2010 from CDC WONDER online database.
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Period prevalence refers to the number of cases over a period of time, most often 1 year. For pediatric palliative care, period prevalence will be larger than point prevalence, because during the time period of 1 year, many cases will have both entered into the case definition (that is, developed the underlying condition)
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The other end of the range of estimates -- but also shifting from point prevalence to annual period prevalence -- would be based on the English study of claims data, applying an annual prevalence of 3.2/1,000 to the population of infants, children, and adolescents in the United States (73.9 million) to estimate 236,480 potential pediatric palliative care patients over the course of 1 year (while also acknowledging that patients with these conditions might not warrant or want palliative care)
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Multiple Complex Chronic Condition Categories and Pediatric Deaths In previous research, pediatric patients with a higher number of different categories of CCCs (e.g., cardiovascular and respiratory CCCs) have been found to have a heightened risk of readmission, more extensive health care utilization, and death.
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Trajectories or Patterns of Experience of the Pediatric Dying Process Based on the preceding data, as well as clinical experience, pediatric patients who die typically experience one of four different patterns of illness trajectory: (1) sudden death (e.g., trauma, meningo-coccemia)
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APPENDIX F 549 FIGURE F-6 Locations of pediatric deaths by age range. SOURCE: Based on Multiple Cause of Death data 2010 from CDC WONDER online database.
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Although there are no precise epidemiologic data regarding the proportion of deaths that follow each trajectory, because many pediatric deaths follow trajectories A, C, or D, predicting death is either not appropriate (for trajectory A) or exceedingly imprecise (trajectories C and D)
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. This increase may be due to a desire to have home be the place of death or to inadvertent deaths occurring to children who are medically FIGURE F-8 Locations of death among deceased pediatric patients with complex chronic conditions.
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. Rising Proportion of Home Deaths Beyond Infancy for Deceased Patients with Complex Chronic Conditions The rise in the proportion of CCC-associated deaths that have occurred at home is observed for most of the CCC categories, with a much larger proportion and increase over time seen in patients beyond infancy (see Figure F-10)
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. In other work focused on hospital care received by dying pediatric patients, we have not found such differences.
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Hospitalization During the Last Year of Life for Decedents with Complex Chronic Conditions Hospitals are operationally important places in which to locate pediatric palliative care services. In multiple studies, the majority of patients whose deaths were attributed to a CCC were noted to have been hospitalized at some point during the last year of life.
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APPENDIX F 555 FIGURE F-12 State-level variation regarding location of death among patients with complex chronic conditions. SOURCE: Based on Multiple Cause Figure F-12 from CDC; see Feudtner et al., of Death data 2007.
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, the development of community-based hospice or palliative care services for the delivery of care in homes is vitally important. Proportion Hospitalized Days Prior to Death FIGURE F-13 Proportion hospitalized during the last year of life for pediatric patients >1 year of age with complex chronic conditions.
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Intensity and Invasiveness of Terminal Hospitalization Care Given that hospitals are where most pediatric deaths occur, examining the interventions received during terminal hospitalizations helps in assembling a portrait of pediatric end-of-life care (see Figure F-15)
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NOTE: ECMO = extracorporeal membrane oxygenation. Figure F-15 SOURCE: Based on PHIS and Premier data, 2007-2012.
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. Emergency Departments and Pediatric Deaths As noted above, in addition to homes and hospitals, EDs are important locations of pediatric end-of-life care, with approximately 22 percent of pediatric deaths occurring in EDs in 2010 (Figure F-16 shows the age distribution of these deaths)
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Pain and Symptoms Among Pediatric Patients Receiving Pediatric Palliative Care In 2008, a 1-year cohort study conducted by six major hospital-based pediatric palliative care programs described the characteristics of pediatric patients receiving palliative care services (Feudtner et al., 2011)
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Competing Domains of Curative Versus Palliative Care: Curative Care Palliative Care 3. Complementary and Concurrent Components of Care: Cure-Seeking Care Life-Extending Care Quality-of-Life and Comfort Maximizing Care Family Supportive and "Grief and Other Emotions" Care Health Care Staff Supportive and "Grief and Other Emotions" Care TIME D ia gnos is D e a th FIGURE F-17 Palliative care as patient-centered complementary and concurrent modes of care.
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Reprinted with permission from Elsevier. Hospital-Based Pediatric Palliative Care Programs Hospital-based pediatric palliative care programs are more common than was previously the case, arising across the United States.
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Bitmapped Staffing of Hospital-Based Pediatric Palliative Care Programs Hospital-based pediatric palliative care programs are remarkably diverse in terms of staffing. Many programs subsist with a minimal staff, most commonly having less than a full-time equivalent (FTE)
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A major priority for both research and program development is to define and advance hospital-based pediatric palliative care program standards. Hospital Charges for Pediatric Hospitalizations We now turn to the financial aspects of pediatric end-of-life care.
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SOURCE: Based on data from PHISFigure F-20 Perspective Database. and the Premier Prognosis and Predicted Probability of Death Among Hospitalized Pediatric Patients Based on previous work, we implemented a prediction of mortality model, which we used as a tool for the subsequent analysis.
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Stated differently, large hospital charges overwhelmingly are for children who survive. Hospital Charges Across the Range of Predicted Probability of Death If pediatric palliative care were to focus just on those patients with the highest probability of dying during that hospitalization, and this threshold could be set at a 50 percent predicted probability of dying (which, as was seen earlier, would translate into a slightly lower observed probability of dying)
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Figure F-22 This is not to say, however, that hospital-based pediatric palliative care is not cost-effective. With most pediatric palliative care programs requiring operating budgets of approximately $2 million per year, curtailing the length of stay of even a few long-stay terminal hospitalizations per year (or preventing terminal hospitalizations in the first place)
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FIGURE F-24 Predicted probability of death across the range of hospital charges. SOURCE: Based on PHIS and Premier data, 2007-2012.
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. These mixed findings regarding the impact of pediatric palliative or hospice care on health care expenditures are consistent with the findings of a recent Cochrane Database Systematic Review focused on adult studies
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. To assess the cost impact of pediatric palliative or hospice services, studies will have to ensure that any change in expenditures before and after exposure is due to exposure to the service, and not to a temporally confounded choice to pursue palliative or hospice care at the same time as the choice is made to forego or avoid further hospital-based or highly invasive forms of care.
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Cohort studies examining the effect of receipt of palliative or hos pice care • n patient-reported outcomes O • n proxy reports by parents or others regarding patient O experience • n outcomes defined using large clinically detailed datasets O 4. Well-designed cost analyses regarding • he care received by pediatric patients with serious illness or T complex chronic conditions • he impact of receipt of palliative care or hospice services T 5.
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2013. Pediatric palliative care programs in children's hospitals: A cross-sectional national survey.
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