Paediatric End-of-Life Decision-Making in Mainland China
PhD student Yang Zhao has an educational background in social work and is exploring the role of social work in palliative care for her PhD.
In Mainland China, pediatric palliative care services remain scarce. Families often shoulder the burden of decision‑making with limited support, while coping with the evolving realities of their child’s illness. Te Ārai PhD student Yang Zhao Master’s research analysed twelve case‑based illness narratives from children ranging from newborns to 18 years old to capture not only the clinical aspects of care but also the emotional and social dimensions that influence their choices. Most importantly, it conveys the idea that biological, social, and psychological factors become increasingly intertwined in the decision-making process as the illness progresses. She recently published her study in the American Journal of Hospice and Palliative Medicine.
Key findings included that, at the outset, decisions were largely shaped by the child’s physical condition and illness. Parents made choices about diagnostic tests, treatments, and hospital transfers based primarily on clinical indicators and physicians’ guidance. In the early stages, medical urgency left little room for other considerations.
Over time, there was a notable shift. As parents processed the progression of illness, their emotional responses played a larger role in decisions. Whether to continue aggressive treatment, move toward comfort care, or honour a child’s specific wishes often reflected deeply personal emotional journeys.
Families routinely faced practical constraints, including:
High medical costs
Long‑distance travel to specialised hospitals
Limited access to trained palliative care staff
These pressures sometimes restricted their ability to make the choices they would have preferred.
Following a child’s death, decision‑making didn’t become easier. Families navigated traditional funeral customs, financial pressures, and the emotional weight of bereavement. Many parents lacked structured bereavement support, and the absence of follow‑up services amplified their distress.
Recommendations from the study include that families need structured, continuous decision support, not just during crises. In addition Yang and her colleagues concluded that":
Healthcare providers require training to recognise and respond to emotional and psychosocial needs.
Mainland China urgently needs stronger bereavement services to support families after a child’s death.
Investment in pediatric palliative care infrastructure—staffing, training, and accessibility—is essential.