While the hope is that no child or family will face the possibility of confronting end of life during hospitalization, it is an unfortunate, devastating and heartbreaking reality for many families. Navigating this experience, particularly with your child or children, is painful and can seem daunting, overwhelming or even impossible. Bereavement support is a crucial piece of the role of a Certified Child Life Specialist [CCLS], which takes many forms in the hospital setting and can provide children with language and other vehicles to help them self-govern their social and emotional health.
A CCLS has the training to engage children in discussions regarding death. Children conceptualize death in a very specific way based on their developmental level. With that in mind, a CCLS utilizes specific language to help children develop an understanding of the concept of death. While it may be common for many adults to want to avoid using the words “death” or “died,” it is important for a child to hear this specific and concrete language. This helps to separate the fantasy, magical thinking that children often utilize from the reality of the situation.
Bereavement support can take many forms based on the family’s comfort level and specific situation surrounding a patient’s death. For example, a patient with a chronic or terminal diagnosis may have time to address, contemplate and anticipate the death process with his or her family. In situations where death is a possibility the family can engage in legacy building opportunities, which can provide a therapeutic outlet. Legacy building is a way for a CCLS to provide memory-making opportunities for patients, siblings, and family members. Child life specialists have reported that legacy building activities help patients and families by providing tangible ways to remember their deceased child (Foster et al., 2012).
Legacy building includes creating tangible items that serve to memorialize a patient, both physically and mentally. Physical keepsakes may include scrapbooks, thumb print jewelry, photographs, videos, locks of hair, or art utilizing hand or footprints of family members. Additionally, writing short stories, journals, poetry or music have been mediums utilized to remember a child’s mind or spirit. This provides the patient with the opportunity to actively participate in the development of these legacy items and provides the family with keepsakes to treasure after their loved one is gone. Engaging the entire family in these types of activities provides a therapeutic mode of expression and an opportunity for the family to bond. Often families express these activities are the first time in a long time they felt they have done something “as a family.” There is close collaboration with art and music therapists to provide these meaningful and therapeutic experiences to families in the hospital setting.
Whenever possible, a CCLS will provide a child with a sense of control over their death experience. This may include asking the child what their preferences are. Children are resilient in the face of these experiences and often have strong preferences regarding their funeral or memorial services, songs they would like included, and art work or photographs they would like displayed.
“I have seen children with cancer respond to the idea of their dying with startling maturity — a 9-year-old boy left a legacy by giving his prized possessions to his friends, planned his funeral and decided what he would wear to his burial.” –Dr. Lawrence Wolfe
Chief of pediatric hematology and oncology at the Floating Hospital for Children at Tufts-New England Medical Center Boston (excerpt from a commentary in the New England Journal of Medicine)
Engaging a child in these types of discussions can seem difficult. Parents’ strongest instinct is to protect their child from information that may be scary or difficult. Research has shown that parents who broached the subject of death with their dying child had no regrets about their choice, while some who hid the truth were sorry for not having the discussion. A study by Kreicbergs, et al. (2004) found 0 out of 147 parents who said they talked to their child about death regretted it. However, of the 258 parents who did not raise the issue, 27 percent said they wish they had done so. The study continues on to discuss how many of the parents who regretted not sharing this information with their child expressed that the patient was aware that they were dying, though no one had told them. This study does not suggest that having this discussion with a patient is always the best choice. Each family is individual and each child’s reaction to such information will be unique. But it does provide a helpful perspective from those who have had these difficult discussions with their children.
Bereavement support may take other forms in the hospital if the death of a child is sudden or unexpected. These losses do not provide the opportunity for the patient to participate in legacy building activities with their family. In these cases, a CCLS may offer the family the opportunity to participate in creating a tangible item to bring home with them. These often include hand molds or prints of hands/feet. While these options are available to families, a sudden or traumatic loss can be difficult to accept and families may decline these options. A CCLS can complete these activities for a family, creating hand molds and other tangible legacy items that can be presented to the family at a later date. In these cases of sudden and unexpected loss, a CCLS may be called to explain to a patient’s sibling what happened to their brother or sister. A parent may not feel ready to have this discussion with a patient’s sibling(s) or feel they don’t know what to say, which is expected and okay! The CCLS can engage siblings in this discussion, ensuring their understanding at their specific developmental level. The CCLS can prepare the siblings to visit the patient. For example, explaining the monitors or tubes they may see in the room or explaining why their sibling may look different than when they last saw them.
I provided this support to a family following a motor vehicle accident that resulted in the death of their 5 year old daughter. When I sat down with the siblings, ages 7, 9 and 14. I chose my words deliberately, and delivered the news gently and slowly.
Do you know why your sister is here with us in the hospital? I began. The siblings were able to tell me that their sister was in car accident. That’s right, your sister was in a car accident. And when she was in this car accident, your sister’s body was very hurt. The part of her body that was hurt the most was her head, which is where her brain is. Your brain is the part of your body that lets you talk, breathe and think. Your sister’s brain was hurt and so the doctors tried very hard to fix your sister’s brain. The doctors tried to do everything they could, but they were not able to fix your sister’s brain. Her brain is no longer working and so that means your sister has died. This means that she is not going to be coming home from the hospital and today is the last time you are going to see her. So while you are here today, this is the time that you should say goodbye to your sister.
Your sister looks like she is sleeping right now and there are machines helping her to breathe which moves her chest up and down. But without those machines, your sister could not breathe on her own and when the machines are shut off, your sister’s body will not be able to work on its own.
While the dialogue may seem repetitive and almost difficult to read, the language used was purposeful. The siblings need to understand that she will not be coming home from the hospital and that they need to say goodbye. They need to understand their sister is not just sleeping and she will not wake up. Even with this direct language, the 7 year old sibling was not understanding the severity of the situation and started to laugh, clearly an inappropriate response. The 9 year old had a single tear streaming down his cheek and the 14 year old hid his head in his hands. I was asked to explain the information again to the 7 year old sibling, which was done in the same careful and deliberate manner.
The siblings decided they would like to go see their sister together. I explained to them that their sister might look a little different than they remember her. When we go into your sister’s room, you may notice she has some tubes and machines near her body. Because her brain is not working, these machines are helping your sister to breathe. We started by standing in the hallway, looking into the room. Slowly we inched closer and closer, until we were at the door. The siblings went in, one by one, led by the oldest brother. At 14 years-old, his grasp on the situation is firm. He held his sister’s hand and cried, demonstrating he understood the finality of the situation. The 7 year old sibling stood further away from the bed, and his gaze went back and forth from his sister to all of the machines in the room. The siblings were allowed private time, uninterrupted by noise which was very important. Finally, after 10 minutes or so of this silence, the 7 year old turned to me and asked, “Can she hear us?” To which I replied, I think that your sister can hear us. We could use this time to talk to your sister, tell her things you want her to know and remember some of the times you spent with your sister that make you smile.
One by one, they spoke to their sister about bike riding, basketball playing and swimming in their grandmother’s pool. At one point, they began to smile and laugh and quickly the room grew silent again. It is okay for you to smile and laugh when you are talking about these memories with your sister, I explained. I would think she would like to hear her room full of smiles and happiness and not all of you being sad. Tell me all about your sister and the things you love about her.
The visit continued well into the evening. The time these siblings spent with their sister was crucial to their coping and bereavement process. Later in the visit, we spent time making finger prints using their sister’s fingers and some of their own. The siblings were each provided a memory stone with one of these fingerprints inside. These keepsakes allowed them to take a piece of their sister with them when they left.
There is no more difficult and challenging hospitalization experience for a family than the loss of their child or sibling. A CCLS can help families to experience and process the emotions of this experience and offer a unique form of support and intervention. While a CCLS can offer this support for families within the hospital walls, finding resources, programs and supports in the community is vital to a families’ healing, coping and grieving process.
For more information speak with your CCLS. Your CCLS will be able to help you and your child(ren) locate a local support group.