Challenges in identifying children for palliative care

If we return to Alan's situation, it was clear that the difficult decision to discontinue aggressive treatment had been made. This decision was based on the uncertainty about benefit. Alan had reached the maximum amount of radiation and there was still active disease present. He had become increasingly resistant to, and was not responding to, treatment. Yet, some team members did not identify him as requiring palliative care. Their perception was based on their subjective impressions of the child's and the mother's conditions. The incongruity between their subjective impressions and the other criteria for determining palliative status could have been heeded as a signal of potential distress, uncertainty, or confusion, and a need for further discussion and clarification of the issues. Nurses caring for terminally ill children who experienced similar incongruencies reported that the resultant distress was best managed through open discussion with their colleagues (7). A major concern exists for the children and families receiving palliative care when there are discrepancies among staff perceptions of the situation. If the staff are confused, then it is likely that the recipients of their care will receive inconsistent and confusing messages from the members of the care team. The successful transition to palliative care as well as thorough palliative care itself depends on doctors, nurses, social workers, psychologists, parents, and children all accepting that the philosophy of care should change. There must be consensus about the overall goals of management and the desirability of specific interventions as the child's condition deteriorates. Collaborative decision making and optimal adjustment can be facilitated by open and honest communication among parents, child, and staff. The most critical aspect is creating a milieu in which each person's view is respected and which allows everyone to talk openly about the fact that cure is no longer possible. If providers are willing to undertake the emotionally challenging tasks of acknowledging that the child is terminally ill, of not avoiding sensitive issues with parents, and of communicating openly and respectfully with each other, they will be able to determine with a reasonable degree of certainty which children need palliative care. This decision is important for sensitive care, treatment, and research.