Advance care planning for children with special health care needs: A survey of parental attitudes

Objectives. This study explored parental attitudes about their interactions with their children9s providers when decision making involved critical life situations. We evaluated parents9 attitudes regarding the following questions: What was the parents9 understanding of their children9s health care issues, and what was the parental perception of the professionals9 understanding of their children and of themselves? Who should be the principal decision makers for the children? What was the parents9 knowledge about advance directives? Did parents want to participate in a process of advance planning to assist with critical life decision making for their children? Methods. We surveyed all parents attending a conference sponsored by the Massachusetts Department of Public Health for parents of children with special needs. The questionnaire was provided to all parents attending the conference. An announcement was made at the conference requesting parental participation. The 76 respondents constitute a convenience sample of parents of children with special needs sufficient for this preliminary stage of investigation. Results. Of 177 parents attending the conference, 76 (43%) completed the questionnaire. Eighty-eight percent of the participants strongly agreed that they understood their children9s conditions. Twenty-one percent stated that they had sufficient understanding of their children9s future medical needs, and 21% thought that they had a sufficient understanding of their children9s developmental potential. Ninety-nine percent of parents strongly agreed that physicians should share information with parents no matter how serious or potentially upsetting. Ninety-four percent of those parents who thought that their children9s physicians understood their own needs also thought that the physicians understood their children9s needs. In contrast, only half (55%) of those parents who thought the physicians did not understand their needs thought the physicians understood their children9s needs. Ninety-two percent of parents who thought that the physicians understood their needs agreed that the physicians would make the best decisions in crises versus 60% of those who did not think the physicians understood their needs. Seventy-four percent stated that they would consider written guidelines for their children that dealt with critical life situations. All parents who thought their children9s conditions were not understood wanted written guidelines. Of those parents who had thought their children would not survive (15 parents), 94% wanted written guidelines. All seven parents who had been told their children would not survive wanted written guidelines. Conclusions. Parents in this study were generally satisfied with care being provided to their children. Nevertheless, the results clearly suggest goals that could lead to improved capacity for parents and providers to make critical life decisions for and with children. First, physicians must understand the needs of parents to be able to make decisions that would be in the children9s best interests. Second, parents should participate fully in critical life decisions for their children and should use written guidelines to assist with the process of these critical life decisions. Our findings strongly support the development of a longitudinal process, initiated early after the onset or discovery of illness and maintained longitudinally throughout the course of a child9s illness, to help parents and providers work together in this vital area of health care to children.