End-of-Life Care Preferences of Pediatric Patients With Cancer

Abstract

These children and adolescents with advanced cancer realized that they were involved in an end-of-life decision, understood the consequences of their decision, and were capable of participating in a complex decision process involving risks to themselves and others. The decision factors most frequently reported by patients were relationship based; this finding is contrary to existing developmental theories.

Development, Feasibility, and Acceptability of the Family/Adolescent-Centered (FACE) Advance Care Planning Intervention for Adolescents with HIV

“…T he American Academy of Pediatrics (AAP), 1 the Institute of Medicine (IOM), 2 and hospital-based policies 3 recommend adolescents be included in end-of-life (EOL) discussions and that: (1) palliative care discussions take place when the patient is medically stable; (2) decisions be individualized; (3) decisions be shared among the adolescent, family and physician; and (4) advance care planning (ACP) become a routine, structured intervention in health care settings. Chronically ill adolescents also have expressed desire to be included in EOL conversations, and their families have asked for help.…”

Trusting Them With the Truth—Disclosure and the Good Death for Children with Terminal Illness

“…The limited research available indicates that in many cases, they do. It is believed that the experience of a terminal illness hastens emotional and cognitive maturation [8]. And, of course, an observant child gleans information from caregivers' and relatives' behavior, medical treatments, and other patients, but, as Barbara Sourkes puts it, the primary source "is the 'wisdom of the body': the child's irrefutable recognition of how sick he or she is" [9].…”

“…Parents must be careful not to make the mistake of equating acknowledgment of death with robbing the child of hope-even hope for a cure, which, it is becoming known, can coexist with acknowledgment of coming death and may even be an optimal coping mechanism [15]. Loss of hope for extended life in no way impairs hope for a meaningful life and a good death [15,16]. Children are capable of finding meaning in their deaths [3]-and that meaning tends to have a surprising amount to do with altruism.…”

“…By far the most reported priorities-mentioned by 19 of the 20 patients-were relational or altruistic in nature, defined by the authors as "decision making affected by caring for others (family, staff, future patients), preferences of others, and the desire to benefit others" [16]. Eleven of those patients (55 percent of the subjects) specifically mentioned wanting to help unknown others (i.e., future patients)-as the authors put it, this "was not anticipated and is not reflected in existing theories of child development" [8].…”

“…Eleven of those patients (55 percent of the subjects) specifically mentioned wanting to help unknown others (i.e., future patients)-as the authors put it, this "was not anticipated and is not reflected in existing theories of child development" [8]. Further, "several adolescents in [the] study sample referred to their decision as their chance to do something good for someone else; one referred to his decision as his final gift to his parent" [8].…”