Understanding death with limited experience in life

Abstract

Purpose of review An up-to-date summary of the literature on children’s and adolescents’ understanding of their own terminal illness and death. Recent findings Clinicians still find it difficult to speak with pediatric patients about death even though guidelines for facilitating communication on the topic exist. As a result, pediatric patients are less likely to develop a clear understanding of their illness and there is a disconnect between clinicians and parents about prognosis, even when clinicians have concluded there is no longer possibility for cure. Insufficient communication and poor understanding may increase the risk of patients feeling isolated, mistrustful and anxious, and deprive them of a role model who can communicate about painful issues or share difficult feelings. Despite these complexities, young people often show remarkable resiliency in the face of death and want to get the most out of the remaining time they have. Summary In addition to these most recent findings, this review examines the challenges in researching this topic, obstacles to patients receiving information about prognosis, and how physical symptoms affect patients’ ability to develop an understanding. It also reviews sources of insight into pediatric patients’ understanding including the development of concepts of death, fears about their own death, legal interpretations of what patients understand, and how terminally ill young people continue to treasure life. It concludes by addressing ways clinicians can use the knowledge we have to communicate well with dying children and adolescents and their families.

Bio-psycho-social-spiritual needs of adolescents and young adults with life-threatening illnesses: Implications for social work practice

“…The diagnosis of a life-threatening or terminal illness in AYA significantly disrupts normal developmental tasks, such as autonomy or identity forma-tion (Barr et al, 2016;Bates & Kearney, 2015;Davies, Kelly, & Hannigan, 2015;Freyer, 2004;Greydanus, 2016). AYA who are dying experience conflict between the dying process and their physical, psychological, and social changes (Klepping, 2012).…”

“…AYA who are dying experience conflict between the dying process and their physical, psychological, and social changes (Klepping, 2012). The dying process also has a negative effect on developmental tasks typical to AYA, such as sexuality, relationships, and body image (Barr et al, 2016;Bates & Kearney, 2015;Knapp, Quinn, Murphy, Brown, & Madden, 2010).…”

“…Social workers can assist an AYA who is dying by acknowledging and honoring their growing need for independence, need for autonomy, developmental level, sexuality concerns and being comfortable having frank but compassionate discussions about death and end-of-life care (Kirk & Fraser, 2014). Bates and Kearney (2015) assert that failure to create an environment where the AYA feels they can talk about their illness and prognosis openly may lead to an increase in mental health concerns in the youth (Bates & Kearney, 2015).…”

“…The most common physical symptoms AYA experience at the end-of-life from advanced cancer are pain and dyspnea (Cohen-Gogo et al, 2011). Untreated physical symptoms can cause extreme distress and mental health crises among AYA, including suicidal ideation (Bates & Kearney, 2015).…”

“…AYA facing a life-threatening or terminal diagnosis frequently experience significant anxiety and depression (Bates & Kearney, 2015;Hølge-Hazelton, Timm, Graugaard, Boisen, & Sperling, 2016). Despite the high incidence of depression and anxiety in terminally ill AYA, no screening tool exists to assess anxiety and depression in this population (Clark & Fasciano, 2015).…”