Supportive Voice Vol. 10 No. 4 Spring 2005

by Barbara Blair

Barbara Blair is a Chilid Life Coordinator, Providence St. Vincent Medical Center, Portland, OR.

See also Finding a Child Life Specialist

Child life specialists play a unique and important role with families at the end of life. These certified professionals are trained to work with the emotional and developmental needs of children in hospital, hospice, and other medical environments. When a mother, father, grandparent, or other loved one is absorbed in end-of-life decisions and care, children in the family can be left out or overlooked. Sometimes, in a misguided attempt to protect children, they are purposefully shielded from the very information and preparation they need in order to cope successfully with this important life event.

Providence St Vincent Medical Center is the first non-pediatric facility in Oregon to employ a child life specialist. St Vincent is a 450-bed acute care hospital serving the Greater Portland area. When children are affected by death or impending death, a child life specialist provides developmentally supportive interactions with these young members of the family free of charge.

An initial assessment of the unique emotional and developmental needs of each child may include his/her understanding of what is happening with the patient, how the child is coping with the patient's illness and absence, as well as the child's conception of illness and death when appropriate. Support is provided and misconceptions are corrected as they are identified. The specialist may then provide a wide variety of services including preparation for visitation, supportive memory-making interactions and basic grief activities. The child may be encouraged to draw a picture or write a note to the patient to bring when he/she visits, thus allowing the child a chance to express emotions and feel a sense of control. If the patient is in the hospital, the specialist may also help prepare the child for a visit. This preparation may involve therapeutic medical play and include a developmentally appropriate description of what the patient looks like, what tubes and machines are in the room, and how the patient may respond or not respond. Goals are set for the visits so that the child is not left feeling lost or uncomfortable. Child life specialists may also be present at the time of withdraw of life support to provide extra assistance to children if needed.

A typical session with a child life specialist is illustrated by the following story:

Jason was 8 years old when his father, who had been having bad headaches, suddenly collapsed while mowing the lawn. Jason was home at the time and called 911 when he could not wake his father up. The next thing he knew, his home was filled with the emergency medical team and his father was being rushed to the hospital in an ambulance. He was taken to a neighbor's home where he was to wait for word from his mother who had been contacted and was on her way to the hospital. Jason's father was admitted through emergency and then sent to surgery and the ICU, intubated, and sedated with a very poor prognosis.

Meanwhile, a day and night pass with no information being given to Jason. His neighbor did not know what to say, and his mother was afraid to upset him. At this time, I was called in to assist with the case. I spoke with the wife who was tired, confused, and very concerned about her son. We discussed the importance of sharing information with Jason in a supportive manner and arranged a meeting with him that afternoon when school was out. During our time together, Jason shared how frightening it was to see his father taken away in the ambulance and that he was very scared that his father would die. He also shared that he felt guilty about his father's headaches and resulting hospitalization due to some arguments they had the days prior. I helped Jason to understand how normal these feelings were and assisted in identifying his misconceptions and answering his questions honestly about his father's serious condition. With the help of pictures and a puppet, I then prepared Jason thoroughly to visit his father in the ICU, explaining each tube and machine carefully as well as how his father would appear. I encouraged Jason to sit with his father, hold his hand, talk to him, or whatever he felt comfortable doing. He chose to draw a picture of himself fishing with his Dad, as this was their favorite activity to do together. I remained with Jason, assisting him with this visit. I introduced Jason to his father's nurse, helped him to feel more comfortable in the room, and taped up his picture for everyone to see.

After several days, the decision was made to place Jason's father on comfort care and withdraw life support. During this time, I helped Jason to understand this decision and to participate in memory-making rituals of his choice such as creating handprints and pictures. Jason also indicated that he would like to spend a little time alone with his father but was afraid to ask. I advocated with the nurse and family for this special time for Jason and was present to provide support at the time of death.

In addition to working directly with children, child life specialists are called upon to provide assistance and ideas to parents in order to help them help their children. Often, caregivers just want to know what words to use or need tips on how to help their children cope during this difficult time. This type of support can also be quite valuable. Ultimately, , after a death, the child life specialist remains involved by providing follow-up care, answering questions about children's needs associated with funerals, memorials, and other family rituals, and offering referrals for grief support as needed.