Transition to end-of-life care at home or in familiar communities for patients with childhood cancer: a retrospective observational study

Abstract

Background: Where children with cancer spend the end-of-life period influences the quality of life of patients and families. However, the process of transitioning from pediatric cancer centers to home or regional medical facilities for end-of-life care in Japan remains poorly characterized.

Aim: This study examined where patients with childhood cancer received end-of-life care after leaving a pediatric cancer center, and how that transition was coordinated.

Methods: This retrospective observational study included 24 patients aged 30 years or younger at death who received treatment for childhood cancer at our hospital between January 2007 and March 2020 and subsequently received end-of-life care at home or in regional medical facilities. Data on place of death, decision-making, and coordination of medical and welfare services were extracted from medical records.

Results: All seven patients who transitioned to home care had solid tumors, including six with brain tumors. Home-visit medical care was provided to all seven, four had face-to-face conferences with regional providers, and a wish for home-based care was expressed alongside concerns about sudden deterioration. In contrast, among the 17 who transitioned to regional medical facilities, a preference for home-based care was documented in 12, whereas arrangements or conferences by our hospital were made in only two, and the place of death was not confirmed.

Conclusions: In the transition to end-of-life care, a wish to return home does not necessarily indicate a preference for death at home, and continuity of care after transfer remains a challenge, warranting further investigation.