Chaplain Helen Wells O’Brien on encouraging families

Putting the CARE Back into Care Conferences: A Work in Progress

I serve as staff chaplain for a children’s hospital where we provide services for pediatric patients up to age eighteen who have experienced brain injury and spinal cord injury. Our care of pediatric patients also includes care of their families. About a year ago, the social worker, Michelle Holmvik, and I set out to change how we conduct family care conferences on our acute pediatric rehabilitation unit.

One of the strengths of our program is the practice of holding regularly scheduled care conferences (every two weeks) with families and with patients, as appropriate. However, our regular care conferences had become little more than reporting sessions, during which physicians, nurses and therapists took turns reporting progress made, goals accomplished and what equipment families would need for discharge planning. Our process of reporting to the family encouraged them to remain silent and passive in care conferences.

As part of the interdisciplinary rehab team, the social worker and I are concerned with the emotional and spiritual health of families as they struggle to adjust to the losses and changes that any serious injury or illness brings. Parents appear to cycle through periods of belief and disbelief in the profound changes that accompany injury or illness in their child and in their family.

We are especially mindful of families whose children are not making significant progress. We notice that when outcomes are uncertain or when progress is less than expected or hoped for, parents struggle to make the necessary preparations for their child to return to the family home.

Some parents experience decreased capacity for decision-making, creating delayed discharges to the home. Parents can be afraid and ashamed to voice concerns about whether or not they will be able to care for their child in the family home, considering the level of care some of our patients need upon leaving acute rehabilitation. Not all families are equipped to care of a severely disabled child in the home. Some families need our assistance in exploring other choices and making decisions about disposition. These decisions involve complex emotional and spiritual dynamics.

To address these concerns, Michelle and I created goals for assisting families in becoming more active and vocal participants in care conferences. Our goals for changing care conferences on the rehabilitation unit have been to:

• encourage active and ongoing communication between the family and the interdisciplinary rehabilitation team.


• enhance the team’s listening for stated values and beliefs that can guide and direct our work with the patient and family.


• continue to provide important information and resources that families need in order to make medical decisions on behalf of their child and to equip family members for the changes and losses brought on by injury or illness.


• enhance family coping and patient transition to home and/or community setting.

To prepare staff for the changes in family care conferences, we invited the Center for Grief, Loss and Transition to conduct several in-services for rehabilitation staff in working with grieving patients and families. We invited an ethicist from a large pediatric hospital system to speak to staff about holding effective care conferences that encourage families to talk about their values and beliefs. With the support of the program manager, we met with the interdisciplinary staff to talk about transitioning from our report format to a structure that would encourage conversation and exchange of information. We enlisted the support of the physician leaders in starting the care conference with comments and questions that encourage dialogue, such as:

• Tell us what you know so far about your child’s condition.


• What questions or concerns would you like us to address in this conference?


• How is your family coping? What concerns do you have about other family members, i.e., siblings, grandparents?


• How do you envision caring for your child at home after discharge? Do you want to hear about other options, outside of home placement, that some families have considered?

Informal feedback from staff and families indicate these changes have been helpful. Families are talking more and staff report patient progress and goals in response to questions and concerns from the family. Care conferences have become more like a conversation between two partners—the family and the staff—acting together in the patient’s best interest. The new format encourages exchange of information, provides opportunities for negotiating difficult issues, and provides a regular setting in which we can truly care for the family in an interdisciplinary way.

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