How Parents Discuss Dying with Their Child with a Life-Limiting Illness Who Require Long-Term Ventilation

The purpose of this presentation is: 1) describe the ethical issues surrounding palliative care in children with life-limiting illness requiring long-term ventilation and their families, and 2) to explain the importance of discussing dying with children with a life-limiting illness who require long-term ventilation and their families.

Major advancements in the field of medical technology have significantly improved the lifespan of children in this very unique population. As those advancements continue and children survive, questions begin to arise about what happens when the child who requires long-term ventilation is nearing the end-of-life. What types of discussions need to happen? Who makes the medical decisions for the child? Is the child included in crucial conversations about end-of-life, or does anyone even discuss dying with them.Families often do not know what to do. Should they tell their child? Should the child be allowed to participate in these discussions? Do children want to leave a legacy for when they are no longer present?

This presentation invites the learner to think about these questions. It also provides information on the importance of discussing dying with children with life-limiting illness who require long-term ventilation and their families. Some suggestions about how to elicit these conversations is also provided.

Importance to the science of nursing: Technology continues to improve and with it the possibilities of extending life are rapidly expanding. As more people live sustained by technology, more ethical issues about end of life care and decision-making will also increase. It is important for nurses to be proactive in their thinking about these types of issues. It is also important for nurses to provide support for the children and families facing these issues. Families often turn to their nurses when they need answers, and as nurses we must be prepared to assist these children and families to have some of these difficult discussions as the child nears the end-of-life to maintain the best life possible for the child and family even unto death.