Joining Voices

CarePoints is a parent-professional partnership that works to improve and maximize care for medically complex children and their families. Mary, Gabrielle, and Kerry facilitated a conversation about the issues facing families that have babies who will not live long lives. They also talked about the types of conversations that need to happen between parents and the professionals who are working with and providing services to them.

End-of-life care requires supportive, collaborative efforts that are family-focused, rather than patient-focused. Many of these same principles can be applied to families whose children have life-threatening or chronic health conditions and who will need to develop long, trusting relationships with the members of the medical community that support their children.

As stated in their program materials, "CarePoints refers to those junctures in care where recognizing an unmet need, responding with a timely resource, or connecting with deep understanding, reflects what it means to be a healing presence to each other." These are opportunities which, when met, offer those involved a chance to develop a deeper understanding and trust of each other. These times can be critical in helping to form a bond that will make a lasting difference in the care provided to a child.

Through the mutual support of parent and professionals, the parents create a care plan that outlines the steps of care they wish for their child. The work of the professionals is to provide supportive information as needed, and to truly to support the decisions made by parents. CarePoints is currently developing an instructional video to be used as a teaching tool in the medical community. The video will include three family stories, and focuses on differences in perspectives among the families.

The presenters distributed an insightful article entitled "Caring for the Child with Cancer at the Close of Life," which is written from the perspectives of professionals, parents, and the adolescent patient.

The presenters led the group in a discussion of the following aspects of parent-professional partnerships:

1. Communication: It is necessary for professionals to use effective, active listening (including reading body language); learn to be present and really listen; allow quiet moments during a conversation to give parents time to process information; give up control of the child's care because parents are the experts when it comes to their child's needs, both physical and developmental. Honesty, trust, and communication must be fostered so that professionals can follow the wishes of the family. It is also important for parents to consider how the professionals can support their "hope" for the situation, no matter what that might mean, and to recognize that those answers may change over time.
2. Legal and moral issues: Professionals need to facilitate decision-making by parents. It is important to make a life for each child, no matter how long that life will be; encourage parents to make a list of questions and ask if they really understand your answers; talk in terms of real, realistic outcomes. In return, parents should be encouraged to offer tangible things that professionals can do for the family in support of their wishes.

The CarePoints website has a wealth of information that is useful to parents of children with complex medical needs, no matter what their age or situation. Among the items are resource lists, information for families of NICU babies, information about surviving the holidays, sibling support, and equipment needs. There is an agency list included in the NICU resource materials. We encourage everyone to visit: www.carepoints.org.