What do adolescents want? An exploratory study regarding end-of-life decision-making

Abstract 

Purpose

To explore whether differences exist between chronically ill and healthy adolescents with regard to their attitudes about end-of-life (EOL) issues.

Methods

A convenience sample of 25 adolescents without and 25 with a chronic illness, aged 13 to 21 years, were surveyed in hospital clinics, using a 25-item instrument; 60% were female and 76% were African-American. Items were developed based on previous research, interviews with health care providers, and a focus group with patients. Data were analyzed using the Fisher’s exact test for 2-tailed p values.

Results

Ninety-six percent of chronically ill and 88% of healthy teens want to share decision-making if they are very ill; 76% prefer to discuss their wishes earlier in the course of a life-threatening illness. There was a trend for chronically ill adolescents to prefer to wait until later in the course of their illness (32% at diagnosis, 32% when first ill, 20% first hospitalization, or 16% if dying), when compared with their healthy peers (68% at diagnosis, 20% first ill, 4% first hospitalization, 8% if dying) (p = .074). Chronically ill adolescents were significantly more likely to prefer to wait to have these discussions, if the data were collapsed for time (first hospitalized and/or dying) (Fisher’s p = .037). Half of all adolescents believed that they would be allowed to change their minds once they had made a decision. Eighty percent of chronically ill and 68% of healthy teens believed that their doctor would respect their wishes, while many were uncertain.

Conclusions

Even teenagers without chronic illness have thoughts about end-of-life issues and have opinions remarkably similar to those of chronically ill teens. Those who are chronically ill are less likely to wish to discuss EOL issues early in their illness.

Keywords:  Adolescent, Decision-making, End-of-Life, Chronic illness