Deaths of pediatric patients: relevance to their medical home, an urban primary care clinic.

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.