Analysis of the circumstances of death of 56 children suffering from cancer: Proposal for the development of terminal medicine in Japan

Abstract

In Japan terminal medicine for children dying from cancer has not yet been developed nor has a support system for home terminal care and bereaved families been established. We have analyzed our own experiences in these areas and researched the possibilities of establishing support systems.In the 16 years from 1978 to 1993, 56 children with cancer have been treated and have died at Hamamatsu University Hospital. We analyzed the circumstances of their deaths. We interviewed 25 sets of parents about their acceptance of their child's death.Three children ( 5 % ) died unexpectedly during treatment, 27 children (48%) died from the side-effects of intensive treatment, and 26 children (47%) died during terminal care. More children with leukemia and lymphoma died from side-effects than children with solid tumors (P c 0.05). Six out of the 25 familieshad not yet accepted the loss of their child due to regrets associated with the missed opportunity for terminal care. From our experiences with the five children who received terminal care at home, we recognize the need for a support system run by the hospital and conclude the time is ripe for initiating home-based terminal care in Japan.

Analysis of the circumstances at the end of life in children with cancer: A single institution's experience in Japan

“…The circumstances surrounding the deaths of children with LL were quite different from those of children with ST; there was less opportunity to provide those in the LL group with terminal care, as it is very difficult to judge from symptoms and laboratory data that a relapse will be fatal. More than two pediatric hematologists/oncologists, however, confirmed the possibility of cure according to the guidelines that we proposed previously 2 …”

“…From our recent seven years’ experience with 28 children, we found the percentages of children who died of PD and who received terminal care had increased significantly in comparison with previous data, 2 as did the number of patients who received terminal care at home and who died at home. The reason for these changes is that the proportion of TRC decreased from 53.6% to 21.4%.…”

“…Table 3 shows comparisons of present data with previous data 2 . The percentage of children in the current period who received terminal care was greater than that shown by our previous data (71.4% vs 46.2%), as was the percentage of those who received terminal care at home (39.3% vs 8.9%) 2 . A greater percentage of children died of PD (78.6% vs 46.4%) and died at home than in the prior period (28.6% vs 3.6%).…”

“…The methods of semi‐structured interview and the results pertaining to the parents’ grief processes were reported in detail in a thesis in 1999 3 . We compared these results to our previous data collected from 1978 to 1993 2 …”

“…Within our hospital, there is only one social worker and no child life specialist, resulting in an insufficient psychosocial support system for both patients and families. We can find few articles in the Japanese published literature that discuss the circumstances of children with end‐stage cancer and the grief of bereaved families 1,2 . With the aim of improving the quality of life (QOL) of children with cancer, we present an analysis of our experience with terminal care from 1994 to 2000 and compare this analysis with data from 1978 to 1993 2 …”