An item created with a patient as a legacy building project

Jessika: Let’s say we’re dead right now. Ideally,what do you want the world to be doing,to be saying when they find out you’re dead?What would be the best case scenario?

Lisbeth: I would want somebody to remember how I taught them to take the string off of celery before you cook it.

Jessika: Why that?

Lisbeth: Because those are the things that I remember about my grandmother (Boles & Berbary,2013, p.1).

To identify best practices for legacy-oriented assessment and intervention is challenging to say the least, when techniques and practices are as varied as the patients and families that we encounter in the hospital setting. So, instead of working from the ground up, it can be more helpful to think about legacy as broadly as overarching theory, much like Piaget and Erikson who guide our understandings of child development. The studies and works completed to date can be categorized into three different perspectives on legacy, each of which has its strengths and limitations within clinical child life practice.

Legacy Building

Most aligned with current child life practice is the legacy building perspective, which refers to interventions that are focused on helping children and families create lasting memories during extended, significantly stressful, or end-of-life healthcare experiences (Sisk, Walker, Gardner, Mandrell, & Grissom, 2012). Practitioners in adult palliative care have defined “legacy making activities” as tangible products created in family contexts specifically to prepare for the end of life (Allen,Hilgeman, Ege, Shuster, & Burgio, 2008); a similar definition in pediatrics has been offered by Foster and colleagues (2009), suggesting that these activities can include anything specifically done to remember a dying child or family member. According to Allen and colleagues, these types of projects, “…1) assist individuals and families in initiating the process of life review, and 2) result in a product that can be enjoyed by family and friends prior to and after the individual’s death”(2008, p. 1031). Though they may take different forms and mediums, legacy building activities are widely available in most children’s hospitals across the United States, and can include specific things done by children and family members so that the dying individual can be remembered (Foster, Dietrich, Friedman, Gordon,& Gilmer, 2012). In this frame of understanding, a death or major life transition is still necessary, as legacy activities must intend to address this impending event in some way. This situates legacy ahead of the death experience, rather than as a product of its occurrence.

I recently worked with a preteen patient who spent several months in the PICU after a scheduled surgery for a brain malformation. Though she had been born with myelomeningocele spina bifida, she was a vibrant young girl that captured the hearts of her school, community, and the world of Twitter through her particularly popular personal hashtag. As she declined,her parents wrestled with the decisions they had made about her care, and ways that they hoped to honor her wishes as her life came to a close. A well-intentioned physician encouraged me to create “legacy items” with the family, which, at our facility, typically means embossed hand prints or molded impressions. Before offering the items, I had a conversation with her mother that I will never forget, one that evolved from providing emotional support to contemplating the patient’s wishes for both her treatment and her legacy.

In the end, her mother declined our “legacy items,”openly stating that she felt her daughter’s legacy was “far bigger than this moment,” and her death was something that “we’ve been preparing for our whole lives.” She had unknowingly pointed out the key limitations of a legacy building perspective, which are its emphases on tangible products, momentary experiences, and the immediacy of death. In addition, this theory leaves questions about the idea of production (are legacy activities meaningful because of the product or the process?) and intentionality (must something be intended as such in order to be part of one’s legacy?).

Legacy Living

The legacy living perspective notes the limitations of prior theories, positing instead that legacy is:

…A lifelong process of co-creation between oneself and others as we create, internalize, and represent our memories in meaningful ways — regardless of long-term prognosis. In this way, legacies are personal and relational summations of our unique histories, current activities, and hopes for the future (Boles,2014, p. 43).

Within this frame, one could say that “my life is my legacy, and my legacy is my life.” The urgency and likelihood of a death event is irrelevant, as legacy is co-constructed on a daily basis through interactions with others and the environment; these can be intangible, amorphous, dynamic, and fleeting as any and every experience has the potential to be written into one’s legacy. Legacy can and does happen at any time, and is decided both within and beyond oneself. Although one may wish to be the author and editor of his or her own legacy, ultimately friends, family, and loved ones will one day tell the stories once the individual is no longer around or able to do so (Berbary & Boles, 2014). Just as a photograph can preserve one’s legacy, so too can an undocumented recollection of that same momentary experience. Each, then, is just as subject to the transformative nature of storytelling and the passage of time.

When we consider legacy in this way, the idea of providing legacy as an “intervention,” starts to crumble, just like saying that waking up in the morning or brushing your teeth is an intervention. Although we can intend to provide these experiences in purposeful ways based on our developmental assessment and the family’s goals of care, legacy can, will, and does happen whether or not we are directly involved in the process. As child life specialists, we have the ability and responsibility to provide a positive and therapeutic context in which these interactions can occur, but at the end of the day, the co-creation of legacy is constant, relational,and unpredictable. It may not look like a finished product such as a hand mold or a memory book, but the experience families can have bonding with and relying upon one another during a significant illness event or the end of a child’s life is just as meaningful,just as powerful, and just as healing. In this regard, legacy is never complete, which means there is always something to be done.

A living perspective on legacy opens up the boundaries of what one’s personal legacy, and thus legacy work, can be. A friend of mine often sends me photo and video snippets from her misadventures with the tagline, “add it to my legacy,” acknowledging the blurred lines between legacy/not-legacy that can exist in day-to-day interactions. I spent a year capturing one second of video each day (see the video embedded in the photo above), and one photo a day for the first year of my son’s life.

When working with long-term patients, legacy living has taken many different forms, as varied as the patients who began them. A young pre-teen started a video documentary that eventually spanned seven years of cancer treatment, several surgeries (including two amputations), and multiple cycles of remission and relapse. An eclectic teenager created a series of humorous lapel buttons featuring his oncologist with popular slogans and recognizable internet memes. Others wrote and recorded music celebrating their relationships with various members of the family, or initiated life stories and art projects that, ironically, were never fully complete. One even appeared in Pediatric Nursing (Tate, 2015).

 At first glance, such projects and activities may seem more fitting of the legacy building perspective. However,these undertakings were never intended as “legacy,”were not designed to address impending death or the continuation of familial bonds. Instead, they arose organically as opportunities to learn a new skill, connect with friends and family during a hospitalization or illness,or even express a quirky sense of humor. Each, like life itself, was a constant active process of connecting, creating, and narrating a human experience.

Conclusion

Perhaps legacy is both within and beyond our control and scope of practice in some ways as child life specialists—a thought that is simultaneously freeing and frightening when working with vulnerable children and families. When examining legacy leaving, building,and living perspectives, it can be seen that legacy-oriented interventions are valuable means for promoting the coping and development of children and families facing life-changing circumstances, no matter which stance you embrace. However, it is also important to note that different perspectives generate different opportunities and obstacles to providing legacy services, just as developmental theories can both expand and limit our assessments of patient and family needs.This awareness of, reflexivity about, and advocacy for legacy work are not only unique facets of child life practice, but also essential elements of our professional legacy of service to children and their families.