PEDIATRICS Vol. 115 No. 1 January 2005, pp. 57-63 (doi:10.1542/peds.2004-0445)
Deaths of Pediatric Patients: Relevance to Their Medical Home, an Urban Primary Care Clinic
* Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland
Department of Pediatrics, New York Presbyterian Hospital, Weill Cornell Campus, New York, New York
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Background. The Institute of Medicine’s report When Children Die emphasizes the importance of the medical home in end-of-life care, but no research has been conducted from this perspective. Identifying types and locations of patient deaths from the perspective of the medical home is important for developing the needed psychosocial support and addressing the longitudinal needs of bereaved families and staff members.
Objectives. The objectives of this study were to quantify and to characterize the deaths of pediatric patients who received their primary care from an urban, hospital-based, resident continuity clinic, to determine the mechanisms of communication about these deaths, and to compare the characteristics of deaths that were sudden, unexpected, or anticipated.
Methods. Patient deaths were identified through a pediatric department-wide tracking system for institutional deaths and a clinic-initiated tracking system for deaths that occurred outside the institution. Patient medical records were reviewed for patient demographic characteristics, preexisting medical conditions, setting and cause of death, and whether an autopsy was performed.
Results. Thirty-six patient deaths were identified between July 1, 1998, and June 31, 2002, within a clinic population of 7000 patients (average annual mortality rate: 0.13%). Seventeen patient deaths (48%) were identified through the institutional tracking system, and 19 (52%) were identified through the clinic-initiated tracking system for deaths that occurred outside the institution. Only 1 anticipated death occurred in the patient's home. Sixty-six percent of patients had underlying medical conditions, with neuromuscular diseases being the most common (28%). The causes of death differed from national data in the Institute of Medicine report and included specific organ failure (58%), probable sudden infant death syndrome (16%), accidental trauma (6%), intentional trauma (6%), and unspecified causes (14%). Twelve deaths (33%) were classified as sudden, 16 (44%) as unexpected, and 8 (22%) as anticipated. Autopsy was performed for 69% of the patients.
Conclusions. The wide diversity of patient ages and types and causes of deaths suggests that medical home sites need end-of-life services that are flexible enough to meet the individual needs of bereaved families and staff members. The greater relative mortality rate and higher proportion of patients with underlying medical conditions, compared with national data, suggest a greater burden of disease in this continuity setting. Medical home sites should consider tracking systems to identify patients who have died. Future research needs to identify the barriers to patients dying at home and to study the impact of patient deaths on medical home staff members.
Key Words: pediatric deaths • medical home • resident continuity clinic setting • urban • primary care • cause of death • autopsy • sudden deaths • unexpected deaths • anticipated deaths
Abbreviations: HIV, human immunodeficiency virus • SIDS, sudden infant death syndrome
Although the majority of pediatric deaths occur in the hospital or an emergency department setting,1–3 support for families from hospital staff members often terminates after the death of the child.3 The Institute of Medicine’s report When Children Die emphasizes the importance of pediatric deaths from the perspective of the primary care clinic, the patient's "medical home."1 The medical home provides care that is "continuous, family centered, coordinated, compassionate, culturally effective," with partnerships and mutual respect among the patient, family members, clinician, and staff members.4 This perspective of the medical home is critical in meeting the medical, psychosocial, and educational needs of bereaved families.1 The health care professionals from the medical home often have shared a longitudinal relationship with the family, serving as a support both before and after the child's death. These staff members may provide bereavement support through telephone calls, sympathy cards, attendance at the funeral, or postmortem meetings with the parents to discuss the autopsy results and evaluate the families' grieving process.3,5 Bereaved families benefit from the involvement of their primary care providers,6,7 and parents' request and appreciate postmortem bereavement follow-up care.8 Medical home staff members may continue to have contact with bereaved families through the provision of ongoing medical care to siblings. Practical reasons to be aware of medical home deaths include notification of the primary care providers and staff members and flagging of the chart so that routine reminders about immunizations or missed appointments are not sent to the family. There is anecdotal evidence at our site that practitioners and staff members are not made aware of a patient's death but parents expect that they knew.
Despite the Institute of Medicine statement on the importance of understanding patient deaths from the medical home perspective, few data are available at either the practitioner or practice level. One adult study in the United States used the National Death Index of patients and found a mortality rate of 6.2% in a patient population of 12 213.9 In Britain, where quality-improvement surveillance systems have been developed since the discovery of a large number of deaths in a practice revealed that the practitioner was killing his patients, the mortality rates in general practitioners' offices demonstrated annual median numbers of 36 deaths per practice (range: 0–212 deaths per practice) and 21 deaths per family physician (range: 0-78 deaths per family physician).10,11 However, those sites provide medical care to patients of all ages, including the elderly, for whom mortality rates are much higher. The only pediatric data reported for the United States involved a simple statement that each general pediatrician in North America cares for <3 children each year who die.12 No distinction was made according to the type of practice setting, the socioeconomic status or ethnicity of the patients, the underlying medical problems, or the causes of death. Because no other data are available to establish the degree of burden or the types of patient deaths from the perspective of the medical home,1 we chose to study these factors in a medical home setting involving a resident, hospital-based, continuity clinic. This type of site may be a particularly important medical home to study, because there are greater proportions of underserved patients and patients with chronic illnesses, with possibly increased mortality risks,13–16 the majority of residents throughout the nation receive their continuity experience at this type of site,13 and this site has the advantage of examining both the institutional and community locations of deaths.
Although a few studies suggested that the psychologic distress for parents is greater in the case of sudden deaths, compared with those with forewarning,1,17,18 there are no data, to our knowledge, examining differences in characteristics among different types of pediatric deaths (eg, sudden, unexpected, or anticipated) from any type of setting, including a primary care setting.1 This aspect is particularly relevant to primary care providers because they have longitudinal relationships with patients and families and may feel greater responsibility for the deaths and past decisions. The objectives of this study were to quantify and to characterize the deaths of pediatric patients who received their primary care from an urban, hospital-based, resident, continuity clinic, to determine the mechanisms of communication about these deaths, and to compare characteristics of deaths that were sudden, unexpected, or anticipated.
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METHODS |
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The deaths of pediatric patients who received their primary care from an urban, hospital-based, resident, continuity clinic at a large academic institution were identified between July 1, 1998, and June 30, 2002. Communication with the medical home staff regarding the deaths took place through 2 distinct tracking mechanisms. Deaths that occurred within the academic hospital setting (within-institution deaths) were identified through a registry of pediatric hospital deaths maintained within the pediatric department. To identify deaths that occurred outside the institution, for the purpose of this study, the clinic staff developed a tracking system. This tracking system tabulated information about patient deaths obtained through communication with a bereaved family member or an external health care facility or from television or newspaper sources.
The departmental registry of hospital pediatric deaths was maintained by the compassionate care committee, a departmental committee devoted to enhancing end-of-life care for patients and families in the Children's Center. This system was useful in tabulating deaths from within the institution (eg, the inpatient units and emergency department). This system did not identify deaths that occurred outside the academic institution, such as deaths that occurred at home, at another hospital, or in the community. To identify deaths that occurred outside the institution, we developed a clinic bereavement committee, which included a social worker, a member of the registration staff, the referral coordinator, and a faculty member (J.R.S.). This committee took responsibility for collating and documenting patient deaths in a log, placing information about the patient's death in the medical chart and electronic patient record, notifying the primary care provider and medical home staff of the death, sending a condolence note to the family, obtaining information about any memorial service to share with the medical home staff, and encouraging the primary care provider to arrange a postmortem visit with the parents.
The medical home location served as a continuity site for residents in training. Medical primary care providers included residents from the PL-1, PL-2, and PL-3 levels, 1 full-time and 2 part-time nurse practitioners, and 3 pediatric faculty members who provided care to their own sets of patients. Patients were offered medical care from birth to adolescence. If patients had significant developmental delays or cognitive impairment and would not benefit from the educational interventions of an adolescent clinic, then they could continue to receive care at this medical home. Because of a separate research program in place, human immunodeficiency virus (HIV)-positive children received their primary care at a separate intensive primary care clinic. Therefore, developmentally normal adolescents who were 
13 years of age and HIV-positive children were not represented in the patient population of this medical home.
Patient deaths were determined during the time period from July 1, 1998, through June 31, 2002, which corresponded to the initiation of the clinic system for prospective tracking of deaths outside the institution. Study variables, which were determined through review of the hospital charts, clinic charts, and electronic patient records, included demographic characteristics of the patient, medical insurance, the presence of chronic medical problems, indicators of longitudinal care (such as whether the child had received medical care from the clinic since birth), and the interval from the last clinic appointment to the child's death. The definition of an underlying medical condition was adopted from the reports of Feudtner et al,19,20 as "a 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."19(p206) Other variables abstracted from the medical records included the level of training of the primary care provider, the cause of death, whether the death was sudden, anticipated, or expected, whether an autopsy was performed, and the site of the autopsy. The setting of the death was noted as within or outside the parent institution. If the death occurred within the parent institution, then the unit in which the child died (eg, pediatric intensive care unit, inpatient ward, or emergency department) was noted. Because it was not always clear in which unit deaths occurred at other medical facilities, such deaths were noted only as occurring outside the institution. The site of death was identified as where the child was pronounced dead. Therefore, if a child was found without a pulse at home but was taken by paramedics to the emergency department, where the child was pronounced dead, then the emergency department was identified as the site of death.
The Institute of Medicine report describes sudden deaths as those without forewarning.1 However, there are no classifications available that distinguish between children with underlying medical conditions whose deaths are unexpected versus anticipated. It is important to distinguish between unexpected and anticipated deaths because there is less time for parents and medical staff members to prepare for unexpected deaths. Because we were unable to find definitions that addressed this issue, we proposed the following definitions. Sudden death was defined as death resulting from trauma for any child or death of a previously healthy child. Anticipated death was defined as death of a child with a terminal or progressive disease for whom death was inevitable and was expected to occur within the next several months. Examples of anticipated deaths include the death of a child with cancer for whom no additional cure-directed treatment is available and the death of a child with a progressive neuromuscular disease (such as muscular dystrophy) and cardiomyopathy that is resistant to additional treatment. Unexpected death was defined as death of a child with a chronic medical condition who was in a regular state of health but died without warning. Examples of unexpected deaths include the death of a child with reactive airway disease who dies as a result of respiratory distress and the death of a developmentally normal child with a controlled seizure disorder who dies as a result of aspiration. The classification of type of death was performed by 1 of the authors (J.R.S.) after chart review.
All study outcomes were determined through review of the medical records and electronic patient records. Autopsy performance was determined through review of the charts, the Baltimore City Medical Examiner records, and records from the pathology department of the parent institution. No family members were contacted for data for this study, so as not to intrude on the privacy of the families. Institutional review board approval was sought and the study was found to be exempt. Health Insurance Portability and Accountability Act acknowledgment to access the pathology department autopsy results for decedents' information was obtained through the institutional review board; medical examiner information was available in the public domain. Data analysis was performed with SPSS version 10.0 software (SPSS, Chicago, IL). 
2 analysis and analysis of variance were performed.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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The patient population of this medical home increased in size from
5000 patients in 1998 to 7000 patients in 2002. During the study period, 80% of the patients received Medicaid, 85% were black, and 40% had either a chronic illness or a high-risk social situation. Thirty-six patient deaths were identified during the 4-year period. Nine deaths occurred between July 1998 and June 1999, 10 deaths between July 1999 and June 2000, 4 deaths between July 2000 and June 2001, and 13 deaths between July 1, 2001, and June 30, 2002. Consistent with the demographic characteristics of the general clinic population, most of the patients were black and received Medicaid (Table 1). The medical providers at the time of death represented all levels of training, and deaths occurred during all seasons of the year. Table 2 lists the individual characteristics of the 36 patients who died. Sixty-six percent of the patients had underlying medical conditions, with neuromuscular disease being the most frequent condition (present for 28% of the patients). Causes of death included specific organ failure in 58% of cases, probable sudden infant death syndrome (SIDS) in 16%, accidental trauma in 6%, suspected intentional trauma in 6%, and unspecified causes in 14%.
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Seventeen of the deaths (48%) occurred within the parent institution (pediatric intensive care unit: 31% of total deaths; emergency department: 14%; inpatient ward: 3%) (Fig 1). Nineteen deaths (52%) occurred outside the parent institution and were identified by the clinic tracking system, with 50% at another hospital and 1 anticipated death at the patient's home; the latter patient died as a result of sequelae from a brain tumor and was receiving hospice services. In comparisons of patient deaths that occurred within and outside the institution, there were no differences in patient age, gender, race, insurance status, time (in weeks) since last examination, cause of death, type of death, or whether an autopsy was performed. The only difference was that patients with chronic neuromuscular diseases were more likely to die outside the institution (9 cases [47%] vs 1 case [6%]; odds ratio: 14.4; 95% confidence interval: 1.42-382; P = .008).
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Table 3 reveals the variables for patients according to the type of death. Twelve deaths (33%) were classified as sudden, 16 (44%) as unexpected, and 8 (22%) as anticipated. There were no differences between groups with respect to gender, race, or medical coverage. For sudden deaths, patients were more likely to have been younger and thus to have been examined at the clinic within the 4 weeks before death. Autopsies were performed for 25 of the total deaths (69%), and 15 of the autopsies (64%) were performed by the medical examiner. Not surprisingly, the medical examiner was more likely to have performed autopsies for deaths classified as sudden.
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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The national mortality rate for infants has been cited as 0.75%. This includes a high neonatal death rate among premature and low birth weight infants, as well as infant deaths attributable to congenital anomalies. Such patient groups were not included in our study. National study data revealed mortality rates of 0.03% for children 1 to 4 years of age and 0.02% for children 5 to 9 years of age.1,21
Our study is the first to describe deaths from the perspective of a medical home. Data from this ambulatory-care academic site, which serves as a resident continuity practice, reveal differences from national data and may allow comparisons with data for other ambulatory sites. These data show the diversity of the types and causes of deaths and the relevance of this information from the perspective of the medical home.
Thirty-six children within this medical home died during a 4-year period, with an average of 9 deaths per year. The annual rate of 9 deaths per 7000 enrollees in this medical home equals 0.13%, which is higher than the national rates for children after the neonatal period. This mortality rate might have been higher than national rates because academic continuity sites are more likely to provide care to underserved populations and those with chronic diseases.13–16 Our mortality data supported this concept. Feudtner et al19 demonstrated that 24% of deaths in Washington State data were attributable to underlying complex chronic conditions, whereas such conditions accounted for 66% of the deaths in our patient population. Academic continuity sites may be good locations for residents to learn about end-of-life issues, and our data demonstrated that all levels of residents and providers were affected. These data can serve as one measure of death in a hospital-based, resident, continuity practice, with which other practices can compare their rates.
The children from this medical home who died spanned a broad age range, with a variety of causes and types of deaths. Although deaths from oncologic and cardiac causes have been described,1,19,20 no other study has demonstrated the large proportion of children with underlying neuromuscular problems who died. Of interest, patients with underlying neuromuscular diseases were also more likely to die outside the institution. In a comparison of our data with those reported by Feudtner et al19 for Washington State, there was a larger proportion of patients with chronic medical conditions in this study (66% vs 25%) but a smaller proportion of deaths during infancy (42% vs 59%). In a comparison of our data with results from the National Vital Statistics Report of 1999, there was a larger proportion of SIDS (17% of deaths, compared with 5%) but a smaller proportion of deaths resulting from unintentional injuries (6%, compared with 22%).1,21 These data demonstrate the utility of individual sites compiling their own mortality data for their medical homes, to indicate what support should be available. Because the causes of death in our study involved sudden, unexpected, and anticipated deaths, medical home staff members must be prepared to address any of these possibilities. These data emphasize that bereaved families are a diverse group and the end-of-life care provided must be flexible and must be able to address individual needs.1
Of the 48% of deaths that occurred within our parent institution, 71% occurred in an inpatient hospital setting and 29% in the emergency department. These findings are comparable to 1997 national mortality data, which showed that the majority of deaths occurred in inpatient settings and 19% occurred in outpatient settings (usually the emergency department).2 Only 1 patient death occurred at home, although 8 deaths (22%) were anticipated deaths. Feudtner et al20,22 found that children who resided in poorer neighborhoods were much less likely to die at home. Communities such as ours, which provide medical care to underserved patients, need to conduct more research to determine the existing barriers to allowing patients whose deaths are anticipated to die at home. We have much more work to do in supporting families and providing them with available resources for palliative care.1
Although we were notified by colleagues of deaths that occurred within our institution, communication about deaths outside the institution was dependent on the actions of family members, other health care providers, and staff members. Keeping informed of patient deaths may be even more challenging for practitioners in private or community practices, who may not have access to interdepartmental communication links. This communication gap between general practice and hospital medicine must be minimized in cases involving end-of-life issues.23 Citywide tracking systems that include universal automatic notification of practitioners by other health care facilities, colleagues, and funeral directors have been described as a method to provide outreach to families by their primary care providers.24–26 Stacy et al25 studied the impact of the development of a citywide death registry for general practitioners in Newcastle, England. The majority of general practitioners stated that they did not routinely receive information about the event or cause of death before the development of the registry but 80% would have welcomed that information. After the implementation of a citywide death registry, 92% found it useful and 73% used it regularly. The majority used the registry to inform other members of the primary health care team, 44% used it for bereavement follow-up care, and 41% used it for canceling of outpatient appointments with patients.25
Autopsies were performed for the majority of our patients (69%). Although the rates were highest for sudden deaths, as expected, autopsies were performed for 50% of anticipated deaths and 63% of unexpected deaths. The large proportion of parents who agreed to autopsies indicates that parents think that the information the autopsy will yield is important and should be communicated to the primary care provider and subsequently to the child's family. Parents have indicated the desire to discuss autopsy reports, and the primary care provider is in the best position to provide parents with the opportunity to talk with someone they trust.27,28 Review of the autopsy findings during a postmortem visit with families has been recommended, to answer their questions, to address their guilt, to determine the level of family functioning, and to provide opportunities for referral to appropriate support groups.3,5,24,28,29 Bereavement follow-up care has been found to be meaningful to families.8,30 Autopsy findings are also helpful, both personally and professionally, to health care professionals, for better integration of the experience and reflection on different ways to approach similar medical issues in the future. Our data suggest that, at our site, the majority of patient families chose to have autopsies performed. This should encourage providers to follow through in obtaining the autopsy results and sharing the information with families.
Research has suggested that the sudden death of a loved one may lead to longer-lasting psychologic distress than a death that was anticipated,31,32 and sudden or unexpected deaths may affect health care professionals in a similar manner. Eighty-three percent of the patients who experienced a sudden death and 33% of those who experienced an unexpected death had been examined within 4 weeks of their death. Although this short period was probably related to the younger ages of the patients who experienced a sudden death, the brief interval might lead health care professionals to question their judgment and to develop self-doubt when reflecting on their most recent encounters with the patients. Medical home sites need to provide opportunities and protected time for discussion of the deaths, to learn from the events and to address the emotional health of staff members.1,12
Several limitations of this study must be mentioned. The number of deaths reported for this medical home was probably an underestimate. Patient deaths could have occurred without being detected by our tracking system. Patients' families might have moved out of the Baltimore area during the study period. In addition, name changes could have occurred or the names of children listed in newspaper obituaries might have been different from the names used for them in the clinic setting. Therefore, incidence rates might have been higher. The reliance on chart review might have contributed to incomplete information, because we were dependent on retrospective information. The data were from a single academic continuity clinic, and additional studies in other medical home sites should indicate how comparable these results are to those for other sites. Although the exclusion of HIV-infected patients and adolescents might have led to lower mortality rate estimates, this medical home had a greater proportion of patients with chronic illnesses, which suggests higher mortality rates for the age groups included. These unique characteristics of this medical home must be kept in mind in mortality rate comparisons with other settings.
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CONCLUSIONS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Thirty-six pediatric patient deaths occurred within this academic medical home during a 4-year period. The average annual mortality rate of 0.13% for children beyond the neonatal period was higher than national mortality rates for comparably aged children but may be an underestimate. Compared with national estimates, patients in this academic medical home had higher rates of underlying chronic illnesses, higher rates of underlying neuromuscular diseases, and higher rates of SIDS but lower rates of unintentional injuries. A minority of patients with anticipated deaths died at home. The wide diversity of patient ages and types and causes of deaths suggests that medical home sites need end-of-life services that are flexible enough to meet the individual needs of bereaved families and staff members. Medical home sites should consider tracking systems to identify patients who have died. Future studies need to address the impact of patient deaths on the medical home staff.
No other pediatric studies quantify or describe patient deaths from the perspective of the medical home. Causes of death relevant to the medical home population need to be determined, so that sites can access information regarding support groups, perform training regarding the implications of the deaths, and determine the emotional impact on the families and staff. The mortality rate for this academic medical home setting can be used as a comparison for other practices. This is also the first study that documents patients with underlying neuromuscular diseases, such as mental retardation and cerebral palsy, as a group at risk for early death. Within a medical home, the death of a pediatric patient may affect multiple members and disciplines of the health care team.23 Educational interventions for medical home staff members who care for high-risk children are needed to facilitate care for families, their colleagues, and themselves, and to guide future research to determine the impact of such deaths on health care providers.
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ACKNOWLEDGMENTS |
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Special thanks go to Dawn Breon, LCSW, Darlene Young, and Sheron Jones, who served with one of the authors (J.R.S.) on the Harriet Lane Clinic Bereavement Committee.
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FOOTNOTES |
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Accepted Jun 21, 2004.
Address correspondence to Janet R. Serwint, MD, Johns Hopkins Hospital, Park 389, 600 N Wolfe St, Baltimore, MD 21287. E-mail: jserwint{at}jhmi.edu
No conflict of interest declared.
This work was presented in part at the Pediatric Academic Societies Meeting; May 3–6, 2003; Seattle, WA.
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