Strategies

At 8 years old, Rachel is just developing reasoning abilities for probability and consequences. She is able to use thought processes to assess events and has a concept of time and the relationship of events. However, she still demonstrates some elements of magical thinking. Many strategies are available that allow us to listen to children like Rachel so that we can understand their fears and hopes.

Body outline doll. A soft, simple body-shaped doll (Fig. 22–2), or the child’s own doll is a useful tool for teaching the child about illness as well as assessing the child’s understanding. For Rachel, the doll can represent the angel she wishes to be. Play and discussions involving the doll can help Rachel’s parents and physician better understand how she pictures herself as an angel. Because children use concrete language, parents and caregivers may assume that they understand more than they do; however, children can and do express important issues if the communication tool is appropriate.

FIGURE 22–2 Child playing with a body outline doll.

In their interactions with Rachel, her caregivers and parents use the body outline doll in play to represent an angel, and they ask questions such as, “Who lives with the angel? What does the angel do during the day? Where does the angel live?”

Rachel’s answers make it clear to her family and her caregivers that her understanding of being an angel is very different from the adult perception. Rachel believes that as an angel, she could stay with her family and play with her friends and that, for the most part, things could remain the way they have been.

Artwork. Children’s artwork can contribute essential information about their awareness, understanding, and fears. Listening to children’s interpretations of their own drawings is an important way for adults to assess their understanding of abstract situations. It is important for Rachel’s physician and family to have a clear understanding of her beliefs. Rachel’s explanation of her drawings of herself as an angel gives them another way of achieving this goal (Fig. 22–3). Asking Rachel the same questions that were asked during play with the body outline doll will help the adults see the topic of angels through Rachel’s eyes.

FIGURE 22–3 Child’s drawing of self as an angel.

Comment. These strategies help Rachel’s parents and caregivers understand that she is fearful but believes that if she refuses treatment, she can just go home. The permanence and irreversibility of death are not meaningful concepts for Rachel. Her parents can now see that she is not ready for death but is simply frightened and anxious. Rachel needs more participation in the medical decisions being made for her, not as the primary decision-maker but as the central figure whose fears and expectations must be addressed if she is to participate in her care.

Strategies

Jason has been through a lot. At age 11, he has spent most of his life with a chronic illness and multiple medical interventions. He has experienced the benefits and limitations of modern medicine firsthand. Certain strategies can help Jason express understandings, fears, and choices, including the use of “what if” games, role-playing, and story-telling.

What if. The “what if” activity can help Jason understand abstract situations in more concrete terms. Simple picture cards can be used to represent his choice of transplant list or no transplant list and the consequences of each choice (Fig. 22–5). This strategy is more successful if Jason identifies with the pictures. Therefore, photographs of himself, his family, and their particular situations are best. Jason, at age 11 with 8 years of repeated medical interventions, may well show that he truly understands the consequence of refusing another transplant. His understanding of continued dialysis dependence can become clear. He may believe that the failure of the first two transplants is predictive of another failure. Alternatively, Jason may be depressed or may have lost faith in medicine because of his past experience. The “what if” cards can help demonstrate logical and appropriate reasoning, magical thinking, or confusion.

FIGURE 22–5 Cards for the “what if” activity.

Finish the story/drawing. The “finish the story/drawing” strategy could be useful in assessing Jason’s understanding of the future implications of decision-making. He would be given a story and asked to finish it by depicting what he thought would happen if a specific course were followed. The key to this strategy is to use the story or drawing as a basis for discussing outcomes and the implications of choices.

Strategies

Adam’s demand presents an apparent child-parent conflict. As a 10-year-old with muscular dystrophy, he has experienced health care interventions and their benefits and burdens. He should have the cognitive skills necessary to understand what this choice means. The particular issue seems to be Adam’s sense of the “good” as he knows it and as he might experience it once he is started on continuous ventilation, contrasted with his parents’ perception of the suffering such a step would entail.

Strategies for Adam include careful discussion with and listening to him. His experience of his illness and its limitations is relevant. He may be very clear and direct in his communication of the “good.” However, because feelings and deeper issues of meaning are involved, other strategies may help clarify Adam’s understanding and convey to his parents what counts for him.

Feelings diary. The goal of the feelings diary is to give Adam the means to express his feelings by asking him to keep a daily record of his good and bad feelings and experiences. In a chart format (Fig. 22–6), Adam could record his feelings and experiences at different times of the day. A careful review of Adam’s diary would give him a visual inventory or “picture” of the mixture of feelings that he has and help him see that they are not all that bad. The next step is to offer counseling designed to build in more good experiences and fewer bad ones when possible. This procedure also gives Adam’s parents and caregivers an idea of what makes him happy. His parents may begin to understand that listening to music and using his computer make Adam happy. Both activities are possible for a patient undergoing home ventilation.

FIGURE 22–6 Patient form for a Feelings Diary.

The feelings diary can also elicit real conflicts. Adam may show feelings of anger toward his parents and the health care team. His statement that he wants to make a different choice for himself from that of his parents may be an attempt to control things when, in fact, he feels very out of control and frightened. This strategy can expose deeper feelings that might adversely affect the freedom Adam needs for valid decision-making.

Finish the story/drawing. The choice of long-term ventilatory support is a major issue. The primary concern is Adam and his best interest, but the decision has major consequences for his family as well. Having Adam complete the story, “When I need to go on the ventilator…” can bring up new issues for discussion. Having him consider the story beginning, “If I don’t go on the ventilator…” may open for discussion Adam’s fear of dying.

Comment. In cases such as this, the apparent conflict between parental decisions and competent child decisions evolves into a much more important discussion of the child’s care during the terminal stages of illness. This case leads naturally to the next section, on special considerations for determining the appropriate involvement of adolescents in medical decisions.

Strategies

Although adolescents can be presumed to have certain maturity in decision-making, their competence to consent in specific situations must be assessed. Because Karen is only 13, you must assess her competence carefully, particularly because her parents are not involved. The issue is complex and is not simply a question of Karen’s intellectual understanding of the consequences of unprotected sexual activity.

Strategies for understanding the emotions involved in adolescent decision-making include activities for self-expression, such as keeping diaries, writing poetry, and art and music (Fig. 22–7). Karen needs to demonstrate some factual information about contraception. More importantly, however, you must determine why this 13-year-old girl is sexually active and plans to continue to be active. Why are her parents not involved in giving her information, guidance, and support?

FIGURE 22–7 Adolescent engaging in an activity of self-expression.

In this case, you must balance your need to protect Karen from the consequences of unprotected sexual activity with the larger good of supporting a 13-year-old whose sexual activity may have psychological and moral consequences in the long term and who is, for reasons needing exploration, avoiding involving her parents in a major life decision.

Comment. In general, physicians need to make judgments about minimizing harm in situations such as that presented by Karen’s request. Recognizing that notification of her parents in this situation is likely to create major difficulties in the patient-physician relationship and may even lead Karen to refuse further advice or treatment, most physicians would respond positively to Karen’s request for contraception. Privacy and protection may determine the initial course of action, but there are larger issues of education and support for this teenager to which a caring physician must be committed over the “long haul.”

Strategies

Adolescents should be presumed to have decisional competence; Steven’s capacity requires careful assessment. You must be clear about Steven’s understanding of the implications of not having a resection, particularly because his views differ from those of his parents. The issue is complex and is not simply a question of Steven’s intellectual understanding of the consequences of not having the surgery. You must try to understand the emotional impact of Steven’s chronic illness on his life, development, and coping, especially because he demonstrates some denial about the course of his illness and magical thinking about his grandmother’s cooking. At 13, Steven is in the category of early adolescence, requiring careful assessment of cognitive, emotional, and familial issues to determine the appropriate roles for Steven and his parents in decisions made about his care.