End of life

Introduction: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical providers. In order for providers to support caregivers, this study explores how caregivers make decisions regarding the medical care of their terminally ill children.

Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years.

Context: All inpatient children receiving pediatric palliative care consults at a free-standing children's hospital.

Background: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. Objectives: We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline.

Background: The number of centenarians in Europe is increasing; many face health impairments. Adult children often play a key role in their care, but there is a lack of research into what it means for these caregiving relatives to be confronted for many years with their parents’ end of life (EOL), dying and death as well as their own advancing age. Objectives: This study aims to analyse the challenges of caregiving adult children regarding their parents’ end of life and the related burdens and barriers they report.

Background: To produce a conceptual and operational definition of transition, in the context of end-of-life care, as experienced by informal caregivers. Methods: The authors used Rodgers' (2000) concept analysis framework to examine this concept. Findings: Common themes emerged using Rodgers' (2000) inductive approach confirming transition for informal caregivers at the end of life as a process comprising the presence of trigger(s)/event(s), awareness, instability and engagement/learning while maintaining normality.

Objective: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress.

Background: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. Aim: To explore bereaved parents' experience and needs for families when a parent is at end of life from cancer with dependent children.

Objectives: To describe communication regarding cancer patient's end-of-life (EoL) wishes by physicians and family caregivers. Methods: An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. Results: For 138 deceased patients we obtained responses from physicians and family caregivers.

Background: This investigation addressed family member perceptions of preparation for withdrawal of life-sustaining treatment in the intensive care unit. These families are at a high risk for psychosocial and physical sequelae. Methods: The quantitative results of this mixed methods study are reported. A control group received usual care and an educational booklet component of the intervention. The experimental group received the above plus exposure to comfort cart items and additional psychological support.