Article Text
Abstract
Introduction Deciding where children with cancer should die -home or hospital- is challenging. This study aims to develop a framework for selecting the place of death for children with cancer and evaluating its effects.
Method The study was conducted at a 24-bed pediatric oncology ward in a northern regional teaching hospital in Taiwan. Semi-structured interviews were conducted with bereaved parents (N=5) and medical staff (N=10). The main factors through data collection were: the staff’s lack of cognition, children with incomplete cognitive development, and insufficient information on family education. The following methods were employed:
Educating the medical team and conducting regular assessments through case discussions.
Establishing a multidisciplinary team for terminal-stage cases, involving pediatric palliative case management specialists, psychologists, pharmacists, social workers, as well as child-friendly healthcare personnel (e.g., Dr. RedNose, child life specialists...).
Designing patient decision aids to assist children and their families in determining the preferred location for the child’s place of death.
Result Out of the 9 children who died during the study period from 2018 to 2022. The completeness of the shared decision-making process for determining the place of death for children with cancer increased from 0% (2017/10/1~2018/09/30) to 55% (2018/10/1~2022/12/31).
Discussion Providing care for terminally ill children with cancer, especially concerning the location of their death, is challenging and might be culturally taboo.
Conclusion It’s crucial for the medical team to actively assist in facilitating communication and coordination between terminally ill patients and their families. This effort contributes to enhancing the quality of a patient‘s death and achieving peace for both the patient and their loved ones.