For this week, we have John Liston speaking about decision making! John Liston worked in the Child Welfare field for over 30 years, ending his career as the Executive Director of the London- Middlesex CAS. He learned a great deal about children’s capacity from his granddaughter, Katie, during treatment for Leukaemia these past few years.
1. The law (Health Care Consent Act) says that young people who can understand the treatment information (‘capable’) can make their own decisions. Why do you think adults struggle with this idea?
‘Responsible and good’ adults are expected and believe their role is to assist and protect those in need and less capable. They genuinely believe they are being helpful in deciding for children. Letting go of this perceived responsibility is often hard for many parents, so adults serving children on behalf of others (children in care) often struggle with this even more because of the hardships many children in care have experienced.
2. What are some of the benefits that you have seen when young people have greater control over their health and bodies?
Clearly children have evolving capacity, but ideally they should be allowed to use the capacity they have as they develop. Engaging children improves their sense of responsibility and self esteem, and improves the likelihood that the treatment will be followed as prescribed. Children sense and can understand more than we often give them credit. By under estimating children we create more anxiety for them. Explain things to children as they are capable and in their language, and they will understand far more than we often assume.
3. In your experience, what do you think are some of the barriers in the care systems to capable young people being able to make their own health decisions?
In care systems are built on a Welfarist philosophy (the best interest of the child approach) rather than on a Rights approach. This difference in approaches makes all the difference in the world then on how children are treated and approached. Secondly today in care systems are so preoccupied with liability concerns, it is often better to err on the side of caution, rather than take a chance and let a child exercise their rights when there may be a question or challenge to the child deciding. Also the bureaucratic nature of our in care systems do not lend themselves to taking initiative and doing things differently. So even when a frontline worker supports children making decisions, the system itself may block this initiative.
4. Can you give us some examples of how the care systems can build the capacity of young people to make their own decisions?
In care service providers can improve things for children in care by having more exposure and discussion of children’s rights and how they might adapt their services to support children in exercising these rights more today. Also as with any other learning endeavor, it is important to start early and with small steps. So where a young child may not be able to decide whether to receive chemotherapy treatment, they can be involved in how and when needles and treatments are administered. They can be included in discussions with medical staff, diets and planning their daily activities. Bureaucratic hospital routines can be bent to allow the child to have some control in their lives and this can and should be done.
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