Bilateral Debate on treatment, looking for any opinions

The link to the article Christine refers to above ( British Journal of Health Psychology: "Trying to Do My Best As a Mother: Decision-Making in Families of Children Undergoing Elective Surgical Treatment for Short Stature" ) asks for $15 to view it. I found the full text of the article in google cache here and here

Since the article is cached - it may not stay available, but in summary: The article discusses interviewing 9 women whose children have achondroplasia: or in the article's own words...

Treatments for conditions of short stature such as achondroplasia are also elective in nature. Although there are no medical consequences associated with height per se, short stature can have a number of social and psychological consequences. Achondroplasia is a genetic condition which primarily involves the skeleton and so restricts growth. It is associated with short limbs in relation to the trunk and is the most common of the disproportionate short- statured conditions.
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Surgical treatment for short stature-limb lengthening-is a very invasive intervention (Saleh, 1997). It involves the application of an external frame held in place by metal pins, which are fixed to the bone on either side of an induced break. The frame is extended by turning screws to pull the break apart until the desired length has been achieved. This must be accompanied by intensive physiotherapy routines to ensure that the soft tissue and muscle develop alongside the lengthening of the limb. The treatment can easily last 12 months and children need the use of a wheelchair for at least some of this time.

The article ends with the thought that psychologists might help parents and their children as the decisions are complex and feelings about the surgery change over time....

However, previous research on elective surgery with children, and such theoretical perspectives, do not capture the complexity of the decision-making process in these families. The models of decision making which predict outcomes from various factors are not elaborate enough to explain the thoughts, behaviours and feelings important for the mothers in this study. Many people were involved in the process: several family members and the medical team, as well as the mother/child dyad. Both mothers and children could feel much ambivalence about the operation, changing their views many times, even after surgery had begun. The process here was similar to that outlined by Smith et al. (2002) in their study on decision making by people at risk for Huntington's disease in many ways, even though the content of the decision was quite different.

Perhaps most importantly, the dilemma that faced the mothers was not whether their child should have the intervention or who should make the choice. Mothers tended to agree that this decision belonged to their child, not to them. Rather, the dilemma concerned the mothers' perceptions of their role in ensuring the quality of their child's decision. The issue for them was not 'should my child have the surgery?', but 'am I doing enough as a parent to help my child make a wise choice?' The mothers in this study were keen that their children should gain a sophisticated understanding of what would be involved in treatment so that they could actively consent to it. Children were helped to do this by mothers offering pieces of information over time in order that their child's knowledge gradually accumulated, and by correcting misunderstandings. Information was sometimes filtered through their adult eyes and mothers used a variety of tests to assess competence.

Thus, the mothers' issues centred around the ability of their children to give informed consent, such that theories of parenting and ethics appear just as relevant here as theories of decision making. Much has been written in the literature about gaining children's informed consent (Kent, 1996). According to developmental models (e.g. Piaget, 1929), children's beliefs about illness and treatment are qualitatively different from adults', bringing into question their ability to consent to medical treatment (Eiser, 1989). It has been argued that young people have difficulty with this up to age 13 (Grisso & Vierling, 1978), yet the mothers in this study needed to be sure that their children could give their informed consent to the surgery before this age. The mothers' difficult task was to help their children process a range of information in readiness to make the decision, thereby advancing the children's natural level of reasoning.

Recent literature suggests that there are three broad sorts of capacities necessary for decision making competence: capacities for understanding and communication of information, capacities for reasoning and deliberation, and the capacity to have and apply a set of values or a conception of the good (Buchanan & Brock, 1989). Especially in relation to elective treatment, children have to be able to anticipate their future. Competence determinations involve matching the capacities of a particular child at a particular time and under particular conditions with the demands of a particular task. Alderson and Montgomery (1996) suggest that adults need to consider, at each stage of treatment, whether or not the child is competent to take a particular decision. This less rigid approach to consent seems to fit with the diversity of individual children and to better explain the processes described here. Research on parenting ill children is also relevant. Alderson (1993) discussed the protective behaviour of mothers towards their children awaiting non-elective surgery. As in the filtering of information reported in this study, Alderson found that parents would withhold information from their children, but for these parents it was to alleviate distress rather than aid decision making.

Seen in this way, psychologists might assist parents, and hence their children, in quite specific ways when elective decisions need to be made in paediatric settings. Because parental anxieties about their children's vulnerabilities and concerns about the validity of their reasoning seem so important, a systems approach to psychological intervention would appear appropriate (Burnham, 1986). Parents, too, could benefit from consideration of their own reasoning about surgery. Psychologists could also assist families in this context by bringing their research skills to bear on a number of issues. Clearly, there is a need to assess the effects of elective surgery on children's well-being. Mothers in this study placed great emphasis on imagined futures, and relied on the views of a relatively small number of other families as sources of information; structured assessments of longer-term outcomes for children who have undergone surgery are needed to help families in their decision making. The assessment of competence and understanding is difficult in children, and few generalizations can be made, but there have been some attempts to establish the competencies of children in this respect (Leikin, 1982). Empirically- based guidelines could assist all parties in helping children to make informed choices.