Parents’ perspectives on the important aspects of care in children dying from life limiting conditions: A qualitative study

An article from Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada). More reports can be found at IPCRC.NET

Medical Journal of Malaysia, 2015;70(5):295-299. Generally children with malignant disease appear to have a precocious understanding of the concepts of death. Their experiences during treatment might include the deaths of other patients, and they can sense the extraordinary stress of their parents and doctors when death is imminent, as well as feel tremendous isolation if they are not given permission to talk openly about their illness and impending death. Whilst knowledge of the developmental understanding of death and timing is critical when it comes to communicating with children, it is also important to be receptive to when the child is initiating a conversation. “Teachable moments” may be fleeting, and healthcare workers need to be trained and tuned to these moments, so that it can be capitalized with an immediate response. Parents who wish but do not know how to break the news to their child are offered assistance by trained staff. The practice of collusion and mutual pretence seems to be commonly adopted by Malaysian families. Asian cultural practices and beliefs may influence the degree of open communication that takes place. An individual is not autonomous but lives in the context of a family and community. In the case of minors and elders, healthcare decisions are often made by the family.  As parents are the final arbiters on decisions and assent a collaborative disclosure process taking into account the family’s wishes within the context of its culture will likely offer greater benefit overall, than would overriding and undermining the parents’ role in promoting the long term autonomy and well being of their children.

Read the full text article at http://www.e-mjm.org/2015/v70n5/paediatric-palliative-care.pdf