Adolescents & End-of-Life Issues

Although terminal illness is never pleasant or easy, it can be especially difficult for adolescents and their families. Losing a child, moving her way toward adulthood, often feels unnatural and makes it difficult for parents to support children because of the power and depth of their own grief. However, adolescent teens need tremendous amounts of support. Coming to grips with mortality during the teen years is particularly difficult. Adolescents, parents and anyone trying to support them have many issues to consider at the end of life.

Mortality

• In the normal course of emotional development, adolescence comes with a sense of empowerment and immortality. Unlike children, teens typically understand the gravity and permanence of mortality -- they just feel exempt from it. A terminal illness or condition undermines that feeling and creates tremendous emotional confusion and angst. Although reactions vary based on personality and life experiences, a teen frequently feels angry, lonely and isolated. He believes others can't understand his emotions and that he doesn't belong with his peer group anymore. A teen may even shut down to his parents when they first begin to understand his illness is terminal. Parents may need the support of therapists, social workers, family and friends to get ideas on how to help their teen cope.

Rights

• An adolescent does not always agree with her physicians or parents on the right course of treatment. The rights of the teen to make important medical decisions -- some that can hasten death -- remain a topic on which courts are divided. Several areas of law and ethics conflict when judges have to rule on an adolescent's desires to make end-of-life decisions for herself. Although through most of her teen years an adolescent is not at the age of majority, the law acknowledges she has capacity and rights over her body. Arthur Caplan, chairman of the Department of Medical Ethics at the University of Pennsylvania, told "The Seattle Times" in 2007 that he has observed a trend of judges ruling in favor of teens petitioning to make their own end-of-life medical decisions.

Participation

• Researchers at Children's National Medical Center and St. Jude's Children's Research Hospital reported in 2009 that a pilot program to assist parents and adolescents with end-of-life planning was successful. Psychologists assisted a group of HIV positive teens and their parents in the process of determining their goals and wishes on how to handle the various stages of AIDS the teens would most likely encounter. Through professionally guided discussion, the collaborating medical facilities found that parents and teens more frequently agreed on courses of action, which also improved relationships during the treatment process and end-of-life stages. Their conclusion was that teens should participate with parents in end-of-life planning.

Therapy

• Terminal illnesses are as emotionally ravaging as they are physically destructive. Each member in a family and a community feels pain and struggles. The American Psychology Association feels that families need tremendous support to deal with the pain of end of life -- both in helping an adolsecent deal with his emotional and spiritual struggles as well as helping parents survive the terrible loss they begin to experience even while their child is still alive. In a 2005 study, the APA determined that psychologists don't receive adequate training for the issues surrounding terminal illness of an adolescent, and have since begun working on better resources and educational curriculum changes to improve this area of therapy.