Parent Perspectives of Neonatal Intensive Care at the End-of-Life

Little is known about the effect of parental bereavement on physical health. We investigated whether the death of a child increased mortality in parents. We undertook a follow-up study based on national registers. From 1980 to 1996, we enrolled 21062 parents in Denmark who had a child who had died (exposed cohort), and 293745 controls--ie, parents whose children were alive, and whose family structure matched that of the exposed cohort. Natural deaths were defined with ICD8 codes 0000-7969 and ICD10 codes A00-R99, and unnatural deaths with codes 8000-9999 and V01-Y98. We used Cox's proportional-hazards regression models to assess the mortality rate of parents up to 18 years after bereavement. We observed an increased overall mortality rate in mothers whose child had died (hazards ratio 1.43, 95% CI 1.24-1.64; p<0.0001). An excess mortality from natural causes (1.44, 1.15-1.78; p<0.0001) was noted in mothers only during the 10th-18th year of follow-up. Mothers had increased mortality rates from unnatural causes throughout follow-up, with the highest rate recorded during the first 3 years (3.84, 2.48-5.88; p<0.0001). Bereaved fathers had only an early excess mortality from unnatural causes (1.57, 1.06-2.32; p=0.04). Mothers who lost a child due to an unnatural death or an unexpected death had a hazard ratio of 1.72 (1.38-2.15; p=0.0040) and 1.67 (1.37-2.03; p=0.0037), respectively. The death of a child is associated with an overall increased mortality from both natural and unnatural causes in mothers, and an early increased mortality from unnatural causes in fathers.

The loss of a child is considered one of the most stressful events in the life of a parent. We hypothesized that parental bereavement increases the risk of hospital admission for a psychiatric disorder, especially for affective disorders. We studied a cohort of 1,082,503 persons identified from national registers in Denmark who were born between 1952 and 1999 and had at least one child under 18 years of age during the follow-up period, from 1970 to 1999. Parents who lost a child during follow-up were categorized as "bereaved" from the date of death of the child. As compared with parents who did not lose a child, parents who lost a child had an overall relative risk of a first psychiatric hospitalization for any disorder of 1.67 (95 percent confidence interval, 1.53 to 1.83). Bereaved mothers had a higher relative risk of being hospitalized for any psychiatric disorder than bereaved fathers (relative risks, 1.78 [95 percent confidence interval, 1.60 to 1.98] and 1.38 [95 percent confidence interval, 1.17 to 1.63], respectively; P value for interaction, 0.01). The relative risks of hospitalization specifically for affective disorders were 1.91 (95 percent confidence interval, 1.59 to 2.30) and 1.61 (95 percent confidence interval, 1.15 to 2.27) for bereaved mothers and fathers, respectively. Among mothers, the relative risk of being hospitalized for any psychiatric disorder was highest during the first year after the death of the child but remained significantly elevated five years or more after the death. The risk of psychiatric hospitalization was increased among parents, especially mothers, who lost a child. Copyright 2005 Massachusetts Medical Society.

When a child's cancer progresses beyond current treatment capability, the parents are likely to participate in noncurative treatment decision making. One factor that helps parents to make these decisions and remain satisfied with them afterward is deciding as they believe a good parent would decide. Because being a good parent to a child with incurable cancer has not been formally defined, we conducted a descriptive study to develop such a definition. In face-to-face interviews, 62 parents who had made one of three decisions (enrollment on a phase I study, do not resuscitate status, or terminal care) for 58 patients responded to two open-ended questions about the definition of a good parent and about how clinicians could help them fulfill this role. For semantic content analysis of the interviews, a rater panel trained in this method independently coded all responses. Inter-rater reliability was excellent. Among the aspects of the definition qualitatively identified were making informed, unselfish decisions in the child's best interest, remaining at the child's side, showing the child that he is cherished, teaching the child to make good decisions, advocating for the child with the staff, and promoting the child's health. We also identified 15 clinician strategies that help parents be a part of making these decisions on behalf of a child with advanced cancer. The definition and the strategies may be used to guide clinicians in helping parents fulfill the good parent role and take comfort afterward in having acted as a good parent.