Defining the Problem
Caring for Adolescents

Adolescents facing death have palliative care needs substantially different from those of younger children or adults. The unique psychosocial issues for dying adolescents—which relate to the normal developmental tasks of this time of life—include greater focus on physical appearance, reversal of developing independence, lack of control, loss of self-confidence, social isolation, disruption of future plans, and desire to be listened to by their care providers (Carr-Gregg et al., 1997). At initiation and during provision of palliative care, communication with adolescents requires particular sensitivity to the concerns characteristic of this age group.

Adolescents with cancer do not have proportionate access to clinical trials sponsored by national pediatric oncology cooperative groups, a possible factor in the relatively lower survival rates observed in this age group (Bleyer et al., 1997). It is not clear whether similar differences exist for adolescents in their access to pediatric palliative care services or in their qualitative experience while receiving services.

Issues of Assent and Consent

Children who are developmentally capable of participating in their own health care decisionmaking are often prevented from doing so. Historically, children have been declared legally and ethically incompetent to participate in decisions about their own health care. Except for circumstances involving mature or emancipated minors, decisions regarding health care for children under age 18 generally are made by surrogate decisionmakers, usually parents. However, some health care providers (and most ethicists and palliative care professionals) believe that children who have reached the age of assent and are capable of expressing a preference should be given choices and have their wishes respected. This is especially true in the area of end-of-life care, when quality, not quantity, of life is the main focus. After all, who better can decide what constitutes quality of life for an individual than that person? Leikin (1993) writes:

…if a minor has experienced an illness for some time, understands it and the benefits and burdens of its treatment, has the ability to reason about it, has previously been involved in decision making about it, and has a comprehension of death that recognizes its personal significance and finality, then that person, irrespective of age, is competent to consent to forgoing life-sustaining treatment.

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