ADOLESCENCE: A CHALLENGINGPOPULATION Adolescence is normally an exciting and often tumultuous time of life that includes: dramatic changes in physical appearance self-esteem attainment increasing independence social skills refinement These skills help the adolescent with the transition into adulthood. Unfortunately, adolescents with a life-limiting condition are unable to follow the normal path into adulthood.
ADOLESCENCE: A CHALLENGINGPOPULATION The leading causes of death in the teenage population include accidents, homicide, and suicide. 3000 + adolescents die annually due to chronic illnesses such as cancer, heart disease, AIDS, pulmonary and renal disease, metabolic disorders, and congenital anomalies. As medical practitioners who care for dying adolescents, we must address the unique transitional issues encountered in this population so that we can improve the quality of life of our patients.
DEVELOPMENTAL STAGES INADOLESCENTS Addressing the palliative care needs of adolescents facing life-limiting illnesses requires consideration into the developmental stages of adolescence. Early (12 to 14 years in girls and 13 to 15 in boys) Middle (14 to 16 years in both girls and boys) Late adolescence/young adulthood (ages 17 to 24 in both girls and boys) Adolescents typically go through these stages at predictable ages; however, the individual child may fall outside the appropriate range.
EARLY ADOLESCENCE (12 TO 14 YEARS IN GIRLS AND 13 TO 15 IN BOYS)Puberty and rapid physical growth begins during this stagecausing body image and peer acceptance to be very important.Life-limiting illness can alter physical appearance and causesevere distress in the early adolescent. It is important that weaddress the concerns of the ill patient and attempt to shift thefocus if possible.Peer acceptance is an important part of growing up and can bea major source of distress in an ill adolescent. This is oftenexacerbated by frequent hospitalizations and absences fromschool.Early adolescents are dependent on their parents andauthorities for decision-making but typically would like to beinvolved in the process.
MIDDLE ADOLESCENCE (14 TO 16 YEARS IN BOTH GIRLS AND BOYS)Focus on: Independence from parents Increasing interest in romantic relationships Increased interaction with peersSide effects of medications and treatments: Can cause distress as adolescents strive to be ‘normal.’ Some adolescents may state that side effects, such as hair loss or weight gain, may be worse than the threat of death. Likely why poor adherence to medical treatments is greatest during this stage.
MIDDLE ADOLESCENCE (14 TO 16 YEARS IN BOTH GIRLS AND BOYS)Independence and autonomy becomes increasingly moreimportant as development progresses.Increasing dependence on their families due to illness canlead to diminished self-esteem and morale.The middle adolescent has increasing ability to usecomplex thinking to engage in discussions about theirmedical care.To encourage autonomy and the feeling of self-control themedical practitioner should encourage the family toinclude the adolescent in the decision-making process.
LATE ADOLESCENCE/YOUNG ADULTHOOD (AGES 17 TO 24 IN BOTH GIRLS AND BOYS)Developmental focuses: Determining career paths Entering serious relationships Securing financial dependenceLate adolescents are concerned about their ability to gainemployment and foster meaningful intimate relationships.Reproduction is often a concern during this stage asfertility can be threatened by an illness or requiredtreatments, and questions about fertility are oftenpondered. Studies have shown that although this is a concern for many adolescents and their families receiving treatments that can alter fertility they do not postpone treatment. Sperm and oocytes can be cryopreserved prior to initiation of treatments such as surgery, radiation and chemotherapy.
LATE ADOLESCENCE/YOUNG ADULTHOOD (AGES 17 TO 24 IN BOTH GIRLS AND BOYS)• Late adolescents often depend more on their families as their disease progresses but autonomy remains essential and their participation in medical decision- making is very important. Legal competence most commonly occurs at age 18 – certain circumstances allow for legal competence at an earlier age – but many late adolescents continue to rely on their parents and family to assist with decisions regarding their care. A plan of shared-decision making within the patient’s family should be developed and supported in a way that remains functional for the adolescent and family.
ADOLESCENT PALLIATIVE MEDICINE The best assessment of an adolescent’s stage includes consideration of both emotional and cognitive development. Accomplish this through open communication with the adolescent as well as their family and friends. Adolescents deal with their illness differently depending on life experiences, developmental stage, medical condition, prognosis and potential for survival, and social dynamics.
ADOLESCENT PALLIATIVE MEDICINEIt is often very difficult for an adolescent to have open andhonest communication at the beginning of a therapeuticrelationship.Communication between a clinician and an adolescentmust include active, empathetic listening and patience.Often many interactions are needed before an adolescentwill engage in open communication.When possible, sit down and get to know the adolescentoutside the circumstances of the disease in order toestablish a beneficial therapeutic relationship.
ESTABLISHING A THERAPEUTICRELATIONSHIP WITH AN ADOLESCENT The following are open-ended questions that can assist in developing an effective therapeutic relationship with an adolescent facing a life threatening condition. Tell me what is important to you? What worries you most? What is your understanding of your illness? Are you suffering from any symptoms? What are your hopes for your life?
ADOLESCENT PALLIATIVE MEDICINETIPS Find ways to maintain relationships/peer importance Keep connections with school Find ways to support independence in context of increasing dependence Encourage writing/journaling – create lists of “What I want” or “How I want to be remembered” Maintaining physical appearance and normal teenage activities (make-up, trip to the mall, trip to school, sporting events)
REFERENCESFreyer, D. Care of the dying adolescent. Pediatrics. 2004;113;381-388.Stevens M, Dunsmore J. Adolescents who are living with a life-threatening illness. In: Corr C and Balk D, eds. Handbook ofAdolescent Death and Bereavement. New York, NY: SpringerPublishing Company; 1996.Suris J, Michaud P, Viner, R. The adolescent with a chroniccondition. Part 1: developmental issues. Arch Dis Childhood.2004; 89:938-94.